“COTA was able to provide a level of support for our family that helped diminish the financial demands.”

Posted on February 1st, 2016 | 1 Comment »

Mallory Kate and her sister, Madison, had the opportunity to sing “Compass” with Lady Antebellum and Hunter Hayes during a live performance at Aaron’s Amphitheater in Atlanta, Georgia, on July 18, 2015.  Lady Antebellum donated a percentage of ticket sales that evening to the COTA in honor of Mallory H fundraising effort.

2016 FEBRUARY Mallory HallBloomington, Indiana February 1, 2016 — February is the month to celebrate love and hearts.  Since 1964, February has been known as American Heart Month throughout the United States.  For the Hall family of Cumming, Georgia, February truly is a month to celebrate hearts, and selfless gifts from the heart.  Three-year-old Mallory is alive, growing and able to celebrate Valentine’s Day this year because of the new heart she received just over a year ago.

Mallory Kate Hall was born on April 24, 2012, to her parents, Dustin and Jessica.  With toddler Madison at home, the couple was excited to leave the hospital and start living their ‘new normal.’  However, that journey took a much different course when Baby Mallory was only 10 days old and contracted an unknown virus that attacked her tiny heart.  The virus led to a condition known as dilated cardiomyopathy that causes the heart muscles to become larger than normal but weaker as well.  For almost two weeks Mallory was on Extracorporeal Membrane Oxygenation (ECMO), which is a procedure that uses a machine to take over the work of the heart.

Eventually Mallory was taken off ECMO and she limped along with medication.  After six long weeks, Mallory was able to leave the hospital.  Her heart was severely enlarged and its function was very weak.  The Hall family was able to keep Mallory at home for just over two years, but to do so their ‘normal’ included many medications and numerous doctor visits.  By the summer of 2014, it was apparent her heart had grown much larger than normal — in fact it was as large as an adult heart but Mallory weighed only 20 pounds.  She was losing weight at a dangerous rate because her appetite had decreased and she was vomiting regularly.  These were all signs that her heart failure was worsening.

On September 5, 2014, Mallory was listed as status 1B for a heart transplant.  The hope was Mallory could continue to live at home until the family received the call that a perfect, new heart had been found.  However, her condition worsened before that call came and she had to be admitted to the Children’s Hospital of Atlanta at Egleston on October 6th.  Reality hit hard when Jessica and Dustin realized they would live as an inpatient family until a new heart was available.  Not knowing how long Mallory’s inpatient waiting time would be or how high the expenses would grow, Jessica and Dustin decided to reach out for help and placed a call to the Children’s Organ Transplant Association (COTA).

COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers.  A COTA fundraising specialist arrived in Cumming in mid-October to meet with a group of the Hall family’s friends and work colleagues.  While this team of dedicated volunteers started working to organize COTA fundraisers, Jessica and Dustin decided to blog about their family’s journey.  Jessica posted, We have been going through a lot of emotions over the past week — anger, acceptance, sadness, fear, excitement — and I would say we experienced each one of these emotions daily and sometimes hourly.  I do not know when that will stop, or if it ever will. 

The inpatient months proved challenging for the Hall family.  Dustin and Jessica split their time between home with daughter, Madison, and the hospital with Mallory.  Jessica’s mom stayed with Mallory once a week so they could be home with Madison, but aside from that one night, the family was split.  As the inpatient days grew longer, Jessica posted, When we first started our journey 33 days ago, the outpouring of support was and continues to be unbelievable.  So many people have been asking how they can help and if we are planning any fundraising.  One of our best friends, Brittany, has graciously offered to head this up as our COTA Community Coordinator.  At this point, Dustin and I are going to focus completely on taking care of Mallory and our family.

Dustin blogged, “Mallory’s hospital schedule splits our time.  It separates a Husband and a Wife.  A Father and Daughter.  A Mother and Daughter.  And most important to me and Jess the amazing, inseparable bond between Madison and Mallory.  It also separates a person from their work.  Dogs from owners.  Immediate family and immediate needs.  It is fractured from every angle.

Thanksgiving week 2014 was very tough on the family.  Jessica described it as ‘hitting rock bottom.’  The family was apart and it started to feel like Christmas was going to be spent this way as well.  Jessica and Dustin were tired and emotionally drained.  Then it happened … the phone rang at 2:00 am on Sunday, December 7th.  Dustin and Jessica told Mallory, who was wide awake, her doctors had found the perfect, pink heart just like she had requested.  By 8:00 am, Mallory was on her way to surgery.  At 5:00 pm they were allowed to see Mallory, and according to Jessica, she looked amazing.  She was pink and her breathing seemed normal.  Even with numerous IVs and a breathing tube … she finally looked healthy to her emotion-ridden parents.

According to Jessica, “Mallory has always beaten the odds — ALWAYS.  Her breathing tube came out at 5:00 am.  When we saw her the next morning, she was herself and it was amazing.  She was only in the ICU for a few days.  She was moved to step down, and she wanted so badly to get out of bed.  Her physical therapists got her up and she walked all the way down the hallway.  Three days before this she had a heart transplant and now she was walking down the hall.  The next day on December 12th, five days post-transplant, we were discharged and Mallory came home with her brand new heart!”

“When we pulled into our neighborhood, people lined the street cheering for her.  Every mailbox (almost 200) had a pink heart balloon, and there was a huge banner in our front yard welcoming Mallory home.  It was the most amazing moment.  We were home just in time for Mallory to walk down the street and meet the school bus — the look on Madison’s face was perfect — and we were together again.”

The COTA in honor of Mallory H team of volunteers exceeded the goal in a matter of months.  The outpouring of support was also overwhelming to Jessica and Dustin.  They said, “COTA gave us hope that our daughter would be able to have a fulfilled life after transplant without having to worry about how we would be able to financially care for her.  COTA provided many resources that helped our community campaign team exceed our goal, and we will forever be grateful.”

This Valentine’s Day, Mallory will be eating her favorite foods and doing her favorite things, which will undoubtedly include playing with her big sister, Madison.  Jessica and Dustin will be remembering their daughter’s heart donor angel with love.

For more information about the Children’s Organ Transplant Association,or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on January 6th, 2016 | No Comments »

annacopleyBloomington, Indiana January 6, 2016 — January is a month full of celebration and joy for the Copley family of Spokane, Washington.  Sixteen years ago on January 14th, the family’s first girl, Anna Rebekah, was born and a few days later taken home to meet her trio of big brothers.  Spunky and smiley Anna will turn 16 this year because one of those brothers gave her the ultimate gift — the gift of life.

Anna Copley was born to ecstatic parents, John and Rebecca.  They already had three amazing boys at home (Andrew then age 7, Matthew then age 5 and Luke then 18 months old) so Anna’s arrival was another perfect chapter in this family’s story. 

According to Rebecca, Anna’s birth was very normal and her birth weight was just over eight pounds.  However, within her first day of life there were red flags because Anna was not nursing well and she seemed very limp.  Baby Anna was sent home from the hospital, but these problems persisted.  The first few weeks of Anna’s life were spent making numerous trips to the hospital’s lactation consultant and experimenting with multiple ways to feed her.  Her weight decreased with every trip.

At three weeks old, Anna contracted respiratory syncytial virus (RSV) and was admitted to their local hospital’s pediatric ICU.  Anna quit breathing during her first night inpatient and she had to be intubated.  During her three-week hospital stay, the infant’s kidneys failed and she required several blood transfusions.  But after a couple of weeks, her kidneys started working again.  Anna was released from the hospital; however, she still had feeding issues and very low muscle tone.

For the next five years, much of the family’s attention was focused on finding ways to get Anna to gain weight.  The little girl also underwent physical therapy to address her muscle tone challenges.  By the time Anna entered kindergarten, she was very small for her age but seemingly normal in all other aspects.  Her kidneys were monitored periodically, but during these early years they were functioning at a ‘low normal’ range.

In September 2009 when Anna started fourth grade, her kidneys began to fail as they had during her first weeks of life.  At the age of nine she was diagnosed with beginning stage 4 chronic kidney failure.  Anna was referred to a pediatric nephrologist in the area, and she started having regular nephrology visits and lab work.  She was put on a kidney diet and prescribed medications to slow the disease’s progression.  The combination of diet and medication worked well for a few years, and she was able to continue on this treatment path into middle school.

By the fall of Anna’s eighth grade year her condition worsened.  She was chronically tired and struggled with insomnia, headaches and concentration.  Anna had no appetite and started losing weight.  Once the winter months came, she itched constantly and started experiencing intense kidney pain.  On February 6, 2014, what the family had avoided for a very long time finally happened.  Anna was placed on dialysis.  She was able to continue attending school and tried to stay involved in her many activities, which included her love of music.

During this time, the transplant team at Seattle Children’s Hospital started diligently working to plan Anna’s inevitable, life-saving kidney transplant.  Anna’s oldest brother, Andrew, started the process of being tested as her donor.  At the same time, John and Rebecca started thinking about the mounting expenses the family would encounter due to Anna’s transplant and Andrew’s donation.  It was during this time of testing when the staff at Seattle Children’s recommended the family research the Children’s Organ Transplant Association (COTA).

COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers.  In early May 2014 a COTA fundraising specialist traveled to Spokane to meet with the volunteers for the COTA campaign in honor of Anna and walked them through the entire process.  Within days of their on-site training, this COTA team was off and running, and within months these COTA volunteers raised more than $50,000 for transplant-related expenses.

“COTA is a 501(c)3 charity so all contributions to COTA in honor of Anna are tax deductible to the fullest extent of the law, and these COTA funds are available for Anna’s lifetime,” Rebecca explained.  “From the first moment we started working with COTA, we felt a sense of relief.”

By late May, Andrew was cleared to be Anna’s kidney donor.  Andrew’s wedding date was set for June 2014 and Anna was asked to be a bridesmaid.  Unfortunately, Anna contracted a staph infection from her dialysis and was not able to attend the wedding.  It was heartbreaking for the entire family, but strengthened their resolve to make sure the transplant happened … and happened quickly.

Anna’s transplant was scheduled for August 6th to allow Andrew ample time for his honeymoon and for getting settled with his wife, Carly.  In early August, the family relocated to Seattle.  But two days prior to the transplant, it was discovered that Anna’s immune system was ‘ramped up’ and doctors feared Anna’s body would work overtime to reject Andrew’s kidney if the transplant occurred at this time.  Terribly disappointed, the family returned to Spokane where Anna’s daily dialysis regimen started once again.  On a positive note, Anna was able to attend marching band camp while on dialysis and to start high school with her classmates in September.

One week before Thanksgiving 2014, the family headed to Seattle once again.  This time all test results looked good.  On December 3rd, Anna received her life-saving kidney from Andrew.  Anna did very well immediately post-transplant.  Andrew was released to return home to Spokane on December 11th.  Anna was released from the hospital on December 20th, but she and Rebecca stayed in Seattle for monitoring until the middle of March 2015. 

According to John and Rebecca, “COTA has given us tremendous hope for Anna’s future. We know Anna will have ongoing medical expenses throughout her life, and we also know she will likely need another transplant at some point in the future.  Anna will always need to take expensive medications.  Since COTA funds are available for Anna’s lifetime, we feel confident she can move into adulthood and face whatever medical challenges that come her way.”

Within two weeks of returning home and returning to school, Anna participated in a jazz festival, a bassoon festival and a concert band festival.  She continues to be grateful for her big brother’s gift.  “We are continually blown away by what our oldest son did for his little sister.  Andrew told us from the time she was diagnosed at the age of 9 that he would give her a kidney when she needed it.  He was in high school at the time.  When she needed a kidney, Andrew was age 21 and he was indeed a match,” Rebecca said.

Today, Anna is doing well.  Her first year post-transplant has not been easy, but Anna continues to push forward with her music, academic studies and church commitments.  Anna is a gifted musician who practices and performs, even when periodic low white blood cell counts make her tired.  She is active in her church youth group; Anna is definitely a role model for many throughout the Spokane community who rallied to raise funds for COTA in her honor. 

Rebecca frequently blogged on Anna’s COTA community campaign website.  Five months after Anna’s transplant, Rebecca wrote: “Last week I sent another group of Anna’s medical bills to COTA.  Every time I do this, I am reminded of the generosity of so many people who have given to COTA in Anna’s honor.  What would we do without you?  I remember what it was like before COTA was helping us.  It was stressful to say the least and the bills then weren’t anywhere near the amounts they have been recently … I want all of you who have given to know that COTA is absolutely wonderful!  They have been there for us through this whole process — from taking care of Andrew and Carly’s expenses while they were in Seattle for the donor surgery, to paying for necessary medications for Anna that we couldn’t possibly afford.  They are quick to respond and always so helpful.  I’ve cried over the phone with them and have received nothing but understanding and encouragement while saying they would take care of it.  And they did — quickly.  COTA has reimbursed us when we’ve had to pay for medications with a credit card because we needed them NOW.  We are eternally grateful to COTA.”

For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on December 7th, 2015 | No Comments »

2015 DEC Alex FastBloomington, Indiana – December 7, 2015 – December is the month when many focus on gifts. For a Florida teen and his mom, December is the month to celebrate the ultimate gift — the gift of life. A gift this Children’s Organ Transplant Association (COTA) family has received twice due to one unsuccessful and one successful liver transplant.

The Fast family’s transplant journey began 16 years ago when then two-year-old Alex was having his annual check-up. His belly was slightly distended so the pediatrician directed Alex’s mom, Michelle, to take him for blood work. The next morning, the pediatrician called Michelle at work and told her to pack a bag and drive Alex to the gastrointestinal clinic in Jacksonville, Florida. After five grueling months of testing, Alex was diagnosed with Primary Sclerosing Cholangitis and Ulcerative Colitis. The only known cure this for diagnosis is a liver transplant.

Michelle, a young, single mother, found this news to be devastating. Alex was prescribed numerous medications that would keep the disease ‘in check’ over the next few years. During those years there were occasional hospitalizations, but Michelle was able to manage the treatment and the trips to the hospital.

The situation changed dramatically in September 2004 when Alex, then age six, started vomiting blood and passed out on the floor right in front of Michelle. He was taken by ambulance to a local hospital in the St. Louis area (where they lived at the time) and immediately listed for a liver transplant. On January 3, 2005, young Alex received his first liver transplant at Cardinal Glennon Children’s Hospital in St. Louis, Missouri. Within a week of that transplant, he required two additional surgeries to repair bleeding and a bile duct leak.

Michelle remembers breathing easier and thinking the worst was behind them. That was not to be the case.

Alex’s first year post-transplant was marked with repeated episodes of rejection and numerous hospitalizations. In August 2005, Alex had surgery to repair a perforated colon and after this surgery, he was re-diagnosed with
Sclerosing Cholangitis. Michelle and Alex returned to Florida where multiple attempts were made to save Alex’s transplanted liver including medications, infusions, chemotherapy and external/internal biliary drains. Nothing seemed to help and Alex’s health continued to deteriorate. During this period, Alex contracted several septic infections and the treatment resulted in a major loss of his hearing.

Finally, Alex’s doctors told Michelle a second transplant was their only remaining option. With the many costs associated with Alex’s first transplant still a hurdle, Michelle reached out for help. She soon discovered the Children’s Organ Transplant Association (COTA) and reached out to learn more about this national, 501(c)3 charity. COTA sent a fundraising specialist to the Fast’s Florida hometown and trained a group of friends and family members to become COTA fundraising volunteers. This highly motivated group started immediately raising funds for transplant-related expenses.

Michelle said, “COTA enabled me, a single mother and Alex’s sole caregiver, to focus on taking care of my son throughout his transplant journey without the worry of how I would be able to pay household bills and medical bills. COTA allowed me to have hope because I could focus on Alex’s care and not all of the transplant-related expenses that kept popping up.”

Finding a transplant center that would accept Alex for his second liver transplant became a very long process due to the complicated nature of Alex’s case. While Michelle and Alex waited to see where he would be accepted for transplant, Alex’s health continued to decline and he battled many health issues. On November 26, 2013, Alex and Michelle were sent via air ambulance hundreds of miles away to Children’s Hospital of Pittsburgh where he was accepted for transplant. Michelle and Alex lived in the nearby Ronald McDonald House for almost three month as they waited for ‘the call.’ Alex’s situation was getting desperate. Finally, on February 6, 2014, the transplant team at Children’s Hospital of Pittsburgh came up with a brilliant, life-saving solution.

According to Michelle, “I have witnessed several miracles throughout Alex’s lifetime, but being accepted at the Children’s Hospital of Pittsburgh was one of them. Alex’s second transplant was so complicated, and I don’t believe he could have been re-transplanted anywhere else. Alex got a domino liver transplant from a living donor, who was receiving a cadaveric liver, and the transplant center made it all work perfectly. I met our donor family in the waiting room during Alex’s transplant as they were waiting for their daughter’s transplant as well. It is a bond, and a gift, that will never be forgotten.”

Sixteen years ago this December, Alex was first diagnosed. This Christmas will likely be full of celebration and joy for Alex and Michelle as they enjoy the holiday season in their Florida home. Alex is a gift for Michelle, who went from long ago praying he would live just one more day, to now making plans for his future.

For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on November 3rd, 2015 | No Comments »

2015 NOVEMBER Katie Patton

Bloomington, Indiana – November 3, 2015 – As the chill of November sets in, thoughts turn to holiday planning, Thanksgiving preparations and gratitude.  A New York family whose young daughter received a life-saving bone marrow transplant from her baby brother has much to celebrate during this month of giving thanks.

Lori and Ryan Patton were thrilled to discover they were pregnant with their first child.  When Katie arrived on April 20, 2009, they were overjoyed.  But shortly after her birth, the baby was diagnosed with Diamond Blackfan Anemia (DBA).  DBA is a rare, genetic blood disorder that occurs when bone marrow fails to make red blood cells that are essential for carrying oxygen from the lungs to all other part of the body.  Normally, bone marrow produces all of the blood cells a child’s body needs, but sometimes genetic defects disrupt the marrow’s ability to make these vital cells.  Baby Katie’s only chance at long-term survival was a bone marrow transplant.

Lori, a high school teacher, shared this narrative about the family’s transplant journey to date with the Children’s Organ Transplant Association (COTA):

 Katie was a preemie, a 32-weeker.  She spent 24 long days in the NICU.  She was a miracle from the day she was born.  It was not the original plan to deliver Katie on April 20, 2009, because I was not in labor.  The morning of April 20th I spent nearly three hours with the pediatric cardiologist having a sonogram because there was fluid around her heart and abdomen.  After a consultation, it was determined she would stay in the womb for another few weeks.  But then my obstetrician said, “I just don’t feel right about it.  My wife and I are going to deliver you today.  Go home pack a bag and meet us at the hospital.”  I was completely surprised.   I did as I was told and a few hours later our 4 pound 13 ounce baby girl was born via cesarean section.  We later found out if she had not been delivered that day she likely would have been a still birth because of her extremely rare blood disorder, Diamond Blackfan Anemia (DBA).  We named her Kathryn Grace because it truly was by the grace of God she is here with us. 

After a variety of tests and 24 very long days in the hospital, we were able to take our baby girl home.  Katie did not have the ability to suck/swallow, had acid reflux, had colic, cried between 10 and 12 hours a day, and needed blood transfusions every two to three weeks.  Ryan and I were way out of our element.  How were we going to take care of a baby who barely fit in our arms, but cried louder than anyone we had ever met?

We were both scared, and this journey was only just beginning.  Instead of being depressed we decided to read everything we could in order to learn more about rare blood disorders and preemies.  We knew Katie was going to require regular blood transfusions for at least a year so we first set up a directed donor system so Katie could receive blood from the same 15 or 20 blood donors. 

We soon discovered the DBA Center for North America was in New York, and we worked closely with experts there to learn more about current research and genetic testing.  Our goal was to find the gene causing DBA in Katie.  After several rounds of genetic testing we were informed that although in nearly 70% of DBA patients there is an identifiable gene, Katie did not fall into that category.  We were devastated.   We sat down again with our team of doctors and went through our options.  It was always the same answer, “Transfusions and monitoring of iron overload for the rest of her life because the steroids did not work.  Transplant is not an option any longer because you could not find the gene therefore you do not know if you carry DBA and will pass it on.” 

I distinctly remember the moment we were told we could not have any other children and also told Katie was no longer a candidate for transplant.  I thought to myself no one will tell us what we can and cannot do.  We found a geneticist who would work with us and a reproductive specialist who had worked with other DBA couples and started the process of becoming pregnant with a sibling donor.

This took more of a toll on us financially and emotionally than I ever imagined.  Since I had no trouble getting pregnant the first time I assumed I would immediately get pregnant the second time.  I could not have been more wrong.  I failed to take into account one very important factor — stress. 

Ryan and I came to a breaking point one night when he told me he no longer wanted to move forward.  He decided we were destined to have one child.  We were nearly out of insurance money that would cover the IVF process and had already spent $25,000 out of our own pockets.  It seemed all the decisions were being made for us. 

In that moment I said to Ryan, “I want you to think back over your life, every moment — going to school on the first day, playing the sports you love, going away to college, working internships, starting your career.  Now I want you to think about Katie growing up … having blood transfusions every two weeks, likely living with us because she can’t hold down a job and eventually dying at the age of 40 because of an iron overload that attacks her organs.  If that is what you want for your daughter then by all means we will stop.  But if it isn’t we need to move forward, put our faith in God and trust we will get pregnant and the new baby will be able to be Katie’s bone marrow donor.”

Fear surrounded us, but we moved forward and we got pregnant.  Brady Christian was born on June 1, 2012, which was the same day as one of Katie’s blood transfusions.  I took her to the transfusion in the morning and delivered him that evening.  I promised Katie I would never miss one of her transfusions … and I never did. 

Once beautiful Brady was born, we began our one year countdown to transplant.  Little did we know it would be an extremely difficult year that was plagued with more hospitalizations than we had previously experienced.  There were several major transplant setbacks during this time, and our hope was dwindling.

One of the biggest setbacks?  Needing to find a new transplant center.

So we began looking for a new transplant center, which was a difficult process.  Sloan Kettering Cancer Center came highly recommended so we visited.  It was the perfect choice for our family, in terms of the facility and the amazing staff.  On August 12, 2013, we arrived at Sloan Kettering with our luggage and room decorations.  We felt that we had prepped Katie for what was about to happen as much as we could.  But when we got there, we were sent home.  Katie blood work was off and we could not proceed.  We were heartbroken. Each week for the next three weeks we were sent home because her blood counts were off and they could not figure out why.  The transplant was postponed until the end of September.  

On September 30, 2013, we were admitted and Katie had surgery early to have a line inserted for the numerous medications she would need.  Around 11pm that evening we were moved to the 9th floor, which would be our home for the next two months.  Chemotherapy started the next day, and the first five days were not bad. Each day, Katie played, ate her normal amounts of food and really didn’t seem to be having any issues.

But then things took a change for the worse.  Katie’s chemo symptoms, including her inability to keep food down, lasted four weeks.  These days were very hard.  I was constantly worried about both Katie and Brady.  My little guy had just undergone a bone marrow harvest and I wasn’t able to be around him at all.   Brady was unable to visit Katie the entire time she was hospitalized because of her compromised immune system.  I missed him terribly, but I knew my focus had to be on Katie.  Even though she was struggling, every single day we got her up out of bed and kept her going.  

About three weeks after receiving Brady’s bone marrow, things started looking up for Katie.  She started to get stronger; we were excited to think we might be able to be released to our temporary housing close to the cancer center.  We were released from the hospital mid November 2013, and Katie has not had a blood transfusion since November 3, 2012.  Although we have experienced setbacks here and there we continue to move forward.  We feel blessed on a daily basis and for the first time in a long time, we have a bright future ahead.

Working with the Children’s Organ Transplant Association (COTA) has given us hope.  Without COTA’s support, both emotionally and financially, this already stressful situation would have been even more so.  With COTA, we did not have to worry constantly about money and the unending bills.  Every time we speak to anyone at COTA, they ask first and foremost about Katie and the rest of our family.  They truly are a wonderful people.   We still are living the transplant process and will continue to do so for some time, but we are extremely grateful to have such a strong support system behind us, and a financial safety net supporting us.”


Happy Thanksgiving, Patton Family, from your COTA Family.

For more information about the Children’s Organ Transplant Association,

or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on October 1st, 2015 | No Comments »

KateBloomington, Indiana – October 1, 2015 – October is Liver Awareness Month, which is the month used by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans have one form or another of liver disease. This October a Georgia family is thrilled to be celebrating a liver transplant anniversary and their daughter’s now healthy liver.

Kate Service was born on May 31, 2008, to adoring parents, William and Lisa Service. They, and their three-year-old son Owen, were thrilled to welcome this beautiful baby girl to their family. The first year of Kate’s life seemed normal to William and Lisa. Life was hectic, but manageable for this Cumming, Georgia, family. However in May 2009, Kate’s pediatrician ordered blood work to try and find answers to Kate’s slow growth. These tests showed Kate had elevated liver enzymes, and for the next 18 months Kate was taken to numerous appointments to be checked by various specialists. During this time, baby Kate endured blood work every few weeks, ultrasounds and even a liver biopsy.

At the end of 18 months of tests and consultations, the doctors still had no answers. And eventually, Kate’s enzyme levels returned to normal. Kate was very small for her age, but otherwise was perfectly normal. The specialist appointments were stopped, and the Service family resumed their normal daily activities.

In January 2013, Kate caught a stomach virus. However, unlike other kids who were suffering from the same bug, Kate did not rebound quickly and once again, blood work was ordered. William and Lisa were told this virus had caused her liver numbers to escalate. But again, there were no solid answers. Kate recovered on her own, but the doctors were not any closer to an answer.

Two months later Kate caught another stomach bug, but this time she was admitted to the hospital for tests and observation. For two days, Kate’s liver levels skyrocketed and by the morning of day three, Kate was transported to Children’s Healthcare of Atlanta at Egleston and immediately admitted to the pediatric intensive care unit. Once again, Kate began to recover on her own; however, the specialists at Egleston discovered her liver had already suffered significant damage … Kate was in liver failure. On March 31st, William and Lisa were told a liver transplant was Kate’s best option to have a full and long life.

This was not news the family expected to hear. There were many questions that needed answers, and there were many preparations to be made. One of the looming issues surrounding Kate’s newly discovered need for a liver transplant was the financial implication for the family. In May 2013, William called the Children’s Organ Transplant Association (COTA) to learn more about how this national organization might be able to help. Several weeks later, a COTA fundraising specialist travelled to Georgia and trained the COTA for Kate S team of volunteers who immediately began raising funds for transplant-related expenses. By May 30th, Kate was officially listed through the United Network for Organ Sharing (UNOS) as needing a liver.

William and Lisa admit hearing the news put them in an ‘altered state.’ They acknowledge that once reality hit they began contemplating the immense financial implications of Kate’s liver failure diagnosis. “We started thinking not just about the initial costs, but the fact this will never go away. As Kate grows up to be an adult, she will need the security of knowing she has help,” William and Lisa said.

“COTA gave us the avenue to accept help and raise funds for now, and for the future, without having to worry about the impact that would result from raising money on our own,” they said. Kate’s devoted team of COTA volunteers decided to use a William Shakespeare quote as the theme for their COTA for Kate S fundraising efforts … “And though she be but little, she is fierce!”

Kate was fortunate to be able to return home and resume her life while the family waited for the call telling them a liver had been found. During these months, she regularly returned to the hospital for tests and evaluations. Her team of specialists decided as long as Kate did not get sick, her liver could sustain her until a donor could be found. But they still had no exact diagnosis as to why her liver failed.

On October 1, 2013, while Kate was in the hospital (once again) recovering from a stomach bug, the Service family got the call … a donor liver had become available. On October 2nd, Kate received her new liver, and her second chance at life. Kate’s transplant recovery went smoothly. Kate was able to return home one week post-transplant. In January 2014, Kate returned to her kindergarten classroom and to her dance classes.

According to William and Lisa, “It is amazing to us, miraculous in fact, that doctors and nurses can do this … They can perform a medical procedure that literally saved our little girl’s life.”

“The people who have gone out of their way to help, the support we have received, the fact that a transplant is possible and that amazing little person who greets you when you get home with a big hug … these are all miracles. It is also a miracle that one family, during what has to be an impossible-to-imagine time, can choose organ donation and give the gift of life to another family.”

Today, Kate still loves going to dance class and playing with her friends. She continues to surprise her parents every day with her strength and her positive outlook. Kate has adjusted to taking her daily, transplant-related medications and has simply returned to her normal, fierce self.
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on September 2nd, 2015 | 1 Comment »

Bloomington, Indiana — September 2, 2015 — The Children’s Organ Transplant Association (COTA) has received Charity Navigator’s 4-star rating for the fifth year in a row.  The 4-star rating, Charity Navigator’s highest, is given to not-for-profit organizations that practice sound fiscal management and are committed to accountability and transparency.

“Only 5% of the charities we rate have received at least five consecutive 4-star evaluations indicating that the Children’s Organ Transplant Association outperforms most other charities in America,” wrote Michael Thatcher, Charity Navigator’s President and CEO, in a letter to COTA.  “This ‘exceptional’ designation from Charity Navigator differentiates COTA from its peers, and demonstrates to the public that COTA is worthy of their trust.”

Founded in 2002, Charity Navigator has become the leading charity evaluator in America.  According to Charity Navigator, receiving four out of a possible four stars indicates COTA adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way.

“COTA is extremely honored to continue to be one of Charity Navigator’s top charities,” said Tony Paganelli, COTA’s Chairman of the Board.  “COTA is committed to using our contributions wisely to the best benefit of our transplant families who are located across the country. Through the dedication of our nationwide network of our Miracle Makers and the guidance of COTA’s Board of Directors, we ensure that 100% of each dollar donated for transplant-related expenses is used that way.”

“Without COTA’s contributors, we would not be able to give children and young adults a second chance at life.  We appreciate the trust of our contributors, and the tireless work of our volunteers,” Paganelli said.

“Receiving four of a possible four stars indicates that COTA adheres to good governance and other best practices that minimize the chance of unethical activities and consistently executes its mission in a fiscally responsible way,” wrote Charity Navigator’s Thatcher.

About the Children’s Organ Transplant Association (COTA)

The Children’s Organ Transplant Association is a national 501(c)3 charity that provides fundraising assistance to transplant families.  Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds.  100% of all funds raised in honor of transplant patients are used for transplant-related expenses.


If you would like to learn more about the Children’s Organ Transplant Association (COTA), please contact Kim Carter Parker (gro.a1455017675toc@m1455017675ik1455017675).

Posted on September 1st, 2015 | 1 Comment »

2015 SEPTEMBER Kaitlyn AdamsBloomington, Indiana – September 1, 2015 — September is National Sickle Cell Awareness Month.  Because it is ‘back to school’ month for most children, the Sickle Cell Disease Association of America wants the public to reflect on the children and adults whose lives, education and careers have been affected by this disease.  A Children’s Organ Transplant Association (COTA) family in Maryland understands the impact of sickle cell anemia first hand, and they are very thankful their daughter is able to return to school this month.

According to the Centers for Disease Control and Prevention, sickle cell disease (SCD) affects people of many racial and ethnic groups.  In the United States, 90,000 to 100,000 people, mainly African Americans, have SCD.  In addition, more than two million people carry the sickle cell gene that allows them potentially to pass the disease on to their children.  SCD causes a person’s red blood cells to become hard and sticky, and look like a C-shaped farm tool called a ‘sickle.’  The sickle-shaped cells die early, which causes a constant shortage of red blood cells.  When a person does not have enough red blood cells, they have a condition called anemia.  In addition, when these misshaped blood cells travel through small blood vessels, they can get stuck and clog the blood flow.  Whenever this happens, it results in severe pain, organ damage and sometimes very serious infections.

Kaitlyn Adams of Waldorf, Maryland, suffered with sickle cell anemia since she was born on April 26, 1999.  She experienced multiple hospitalization and numerous complications throughout the early years of her life.  In 2012, Kaitlyn’s sickle cell complications escalated to the point where they were negatively impacting her quality of life.

Once Kaitlyn started struggling with immense pain and other debilitating side effects, doctors at Children’s National Medical Center in Washington, D.C. determined she was a candidate for a half-match bone marrow transplant, which is the only known ‘cure’ for this disease.  This determination made Kaitlyn’s bone marrow transplant imminent because it widened the donor pool, which meant the transplant could happen very quickly.

Tijuana and Paul Adams knew they would need financial help to make it through Kaitlyn’s transplant and be able to maintain their home, their jobs and their son’s college education.  In July 2012, Tijuana called the Children’s Organ Transplant Association (COTA) after hearing about the organization through the family’s transplant team.

COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers.  A COTA fundraising specialist traveled to Maryland in August 2012 to meet with the COTA for Kaitlyn A volunteers and walked them through the entire process.  This group of COTA volunteers immediately started raising funds for transplant-related expenses.

Kaitlyn experienced many emotions throughout the days leading up to her bone marrow transplant.  There were many tears from losing all of her hair, and constantly feeling sick due to the chemotherapy that was necessary to get her body ready for the new cells.  She feared the transplant would be unsuccessful.  She was uncertain what to expect, but she was elated when she thought about being sickle cell free.  Kaitlyn was determined to have a positive outlook throughout the long and stressful process.

Prior to the transplant, Kaitlyn was admitted to The Johns Hopkins Hospital in Baltimore, Maryland, to prepare her body for this big transformation.  She was introduced to the special team of nurses and doctors who would follow and support her throughout her transplant journey.  Kaitlyn quickly became known as ‘the cheerful girl with all of the fashionable clothes.’

On June 21, 2013, Kaitlyn received her gift of life from a very special donor, her mom, Tijuana.  That day, Kaitlyn’s ‘new birthday’ was celebrated by her entire team of COTA volunteers and numerous friends and family members across the country.  The huge, zebra print decorated bulletin board in her hospital room was filled with notes and cards from her many supporters.

Kaitlyn developed a very special bond with her transplant nurses.  They knew what to do to make her smile on bad days, like making her chocolate milk shakes.  Whenever she needed a word of encouragement, a shoulder to lean on, a word of advice or a funny joke, she could always count on them.  Kaitlyn’s routine consisted of taking medicines at least three times per day, being hooked up to her IV pole, trying to eat three meals a day (when she could keep food down), watching her favorite television shows, getting the latest news from her friends on social media and taking laps around the floor.

On July 17, 2014, Kaitlyn and her family left the transplant floor and moved into a nearby recovery housing complex, which was called Believe in Tomorrow.  The apartment was very cozy with a family-friendly atmosphere.  The Adams family developed a close bond with the four post-transplant families who were recovering there as well.  Kaitlyn had a lot of restrictions that included eating certain foods and wearing a mask, and she had to take more than 19 different medications daily.  On September 27th, her transplant doctors were very impressed with her test results and they gave the family the ‘thumbs up’ to return to their Waldorf, Maryland, home.

According to Tijuana and Paul, “Kaitlyn’s transplant journey has been very stressful and demanding, but COTA provided a ‘comfort blanket’ because we knew that certain necessities along the way would be taken care of.  Once Kaitlyn’s COTA team reached its financial goal, we were given lots of hope that the rest of the transplant would fall into place, and we would not have to stress about financial uncertainty.”

Kaitlyn and her family were graciously welcomed back home in Waldorf with a circle of supporters waving signs and banners, and yelling cheers of joy as the family approached their street.  Kaitlyn was deeply touched by the enthusiastic welcome.  The adjustment to being home has been a challenge for Kaitlyn, but she is working hard to return to a normal life.  Kaitlyn continues to be a staunch advocate for promoting awareness of sickle cell anemia in the hopes of one day being able to see a cure found for this devastating disease.

Prior to her transplant, Kaitlyn shared some thoughts about gratitude with COTA:

I am grateful for being able to wake up each day.  And I am grateful for my family and all of my friends who are taking care of me and providing for me as I continue this fight.  I am also very grateful that the Children’s Organ Transplant Association has come into my life.  Because of COTA, my transplant is possible.  Because of COTA, my life is going to change very soon.  I am so thankful.

I do worry about getting through my sickle cell anemia.  I do worry about the constant pain I am in and how it will continue to impact my life.  I worry that other people don’t consider me normal.  I worry about my transplant.  When I grow up, I dream about being a registered nurse so I am able to give back to others who may have to fight this same fight. 

According to Tijuana and Paul, “A miracle occurred as soon as we became a COTA family.  Knowing COTA would be by our side throughout Kaitlyn’s transplant journey, with financial and emotional support, paved the way to a successful transplant experience.  COTA gave Kaitlyn the opportunity to share her story, which was a true blessing, because she has been able to touch other lives as well.”

Today, Kaitlyn is post-transplant and returning to high school to continue her education and keep working toward her goals.  She loves to listen to music, hang out with her friends, and go shopping.  Recently, Kaitlyn told COTA her hope for the future is, “that there would be a cure for EVERYONE who has this devastating illness.”

A very appropriate wish for the month of September … National Sickle Cell Awareness Month.

For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on July 31st, 2015 | No Comments »

2015 AUGUST Leiya OrellanaBloomington, Indiana — July 31, 2015 — The first week of August is designated as National Minority Donor Awareness Week, which is a seven-day period that one Englewood, North Jersey, family will be celebrating with joy and gratitude. If a suitable lung donor had not become available, it is possible their little girl would not be dancing to music with her big sister, playing with her pink toys and grinning from ear to ear during her favorite television shows … just like other toddlers will be doing this month.

Leiya Orellana was born nearly 10 weeks premature on May 10, 2012, and she was immediately taken to the neonatal intensive care unit at Saint Barnabas Medical Center in Livingston, New Jersey. She weighed one pound, and her parents, Tatiana Valderrama and Steve Orellana, knew the odds were against her. But with every bit of formula she tolerated, Leiya fought hard to survive.

At five months old, Leiya was diagnosed with Pulmonary Vein Stenosis and Pulmonary Hypertension. Leiya’s team of neonatal specialists determined she needed to be medically transferred to Children’s Hospital of Philadelphia (CHoP) for evaluation and infant cardiac care. Tatiana and Steve quickly grabbed some necessities and joined Leiya at CHoP’s Cardiac Intensive Care Unit. Tatiana and Steve relocated to the Gift of Life House in Philadelphia once they learned their family would be away from home for some time — Leiya needed a life-saving double lung transplant to survive. On December 12, 2012, tiny infant Leiya was listed for transplant.

Tatiana remembers speaking with other Gift of Life House parents whose children were also struggling to live. During a chat in a common area in the facility, a Gift of Life social worker encouraged Tatiana and Steve to contact the Children’s Organ Transplant Association (COTA). “Since Leiya’s birth we had been dealing with so many emotions and struggling financially so I decided to reach out and see what COTA was all about. From my first phone call to COTA’s headquarters in April 2013, I felt reassured,” Tatiana said.

COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to New Jersey to meet with the COTA for Leiya O volunteers and walked them through the entire process. By the summer months, the COTA volunteer team was moving forward with fundraising plans for transplant-related expenses.

According to Tatiana and Steve, “COTA provided our family hope at a very difficult time when hope was all we had left. The amazing support we received allowed us to be with our baby daughter when she needed us the most, and relieved the financial strain due to being unable to work. Every message left on Leiya’s COTA website reminded us we were not alone in the process.”

Despite being on so many medications, Leiya always made sure her feisty personality was front and center. Leiya celebrated her first birthday on May 10, 2013, in the cardiac intensive care unit. It was a day full of pink princesses, lots of toys and many friends, family members and hospital employees who stopped by her hospital room to make the big day extra special. A few days later, she pulled her feeding tube out of her nose just to remind all her caregivers who was really in charge.

On July 25, 2013, Tatiana and Steve got the news for which they had been waiting, and praying. Leiya’s new lungs were on their way to CHoP. Leiya was in surgery for only three hours, and there were no transplant complications. Leiya’s COTA supporters called themselves ‘Leiya’s Angels”, which according to Tatiana was an incredibly fitting nickname because the support of the baby’s COTA angels and supporters carried Leiya through this transplant … this second chance at life … this miracle.

“The first day after transplant her ventilator was weaned significantly, her blood gases were perfect, her chest tubes were draining normally, the foley catheter was removed and she had a perfect echocardiogram,” Tatiana remembers with a smile. “There was no more pulmonary hypertension. It was startling to see our little Leiya with so many tubes, lines and machines but she remained a feisty, fighting rock star.”

Leiya did encounter some bumps in her post-transplant recovery including a lung collapse during her first post-transplant bronchoscopy and biopsy. But despite that small setback, she remained super playful, full of laughter and quite happy. On September 4, 2013, Leiya was discharged to an apartment very close to CHoP to continue her post-transplant care and testing. By Halloween, this one-pound baby at birth now weighed 21 pounds. It was truly a miracle.

“COTA has been, and continues to be, pivotal to us being able to cope with Leiya’s transplant,” Tatiana said. “The financial burden of this transplant journey has been overwhelming. Once COTA stepped in and the wonderful volunteers kept sharing Leiya’s story, a significant weight was lifted off our shoulders. We were able to band together as a family and take things one-at-a-time. Being a COTA family allowed us to provide Leiya the best care possible.”

2014 brought many developmental milestones for Leiya, including baby sounds, strong legs she could begin to stand on, oral feeds and solid growth in all developmental areas. Just before her second birthday, Leiya began to crawl. On May 11, 2014, Leiya and her family were able to move home to Englewood where a huge second birthday celebration was held in her honor.

Prior to moving home, Tatiana blogged this message on Leiya’s COTA website, “We think about everyone who has supported us through Leiya’s journey and we are so thankful. Words cannot express how much we appreciate the support through COTA that has allowed us to take care of Leiya and dedicate our time to her recovery. It is the reason she is doing so well. Thank you, everyone, from the bottom of our hearts.”

Today, Leiya is an amazing toddler who is meeting all of her developmental benchmarks. She is, according to her parents, a miracle. Tatiana and Steve are very glad to be back in Englewood, living as a ‘normal’ family. They love to watch Leiya move and dance and giggle … and they are very grateful to her donor angel’s family for making a tough decision to donate their child’s organs.

Rock on, Leiya!

For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on June 29th, 2015 | No Comments »
Everett Darby

Everett Darby

Bloomington, Indiana — July 1, 2015- On the fourth day of July, America pauses to celebrate its freedom, and to celebrate the men and women who have ensured that freedom for more than 200 years.  This July, a Colorado COTA Dad and Iraq veteran is thankful his son is alive and able to take part in the 4th of July celebrations — something that did not seem possible just a short time ago.

Kurt Darby served three tours of duty as a Marine in Iraq.  But one of the biggest battles he ever faced was fighting for his son’s life.

At Katherine Darby’s six-month pregnancy check up, she and Kurt were told their baby had an immune deficiency known as X-Linked Hyper IgM Syndrome.  This syndrome causes a person’s immune system to not work properly.  Simply put, it meant the baby’s body could not fight infection.  Once born, the baby’s only chance of survival was a bone marrow transplant (BMT).

Everett Darby was born on February 13, 2012.  The baby was treated with IV immunoglobins from the age of four weeks old to try and maintain a level of coverage that would keep him healthy until he could undergo a BMT.   Kurt and Katherine were told the transplant would allow Everett’s body to fix the genetic coding and make his body produce everything correctly.  The hope was Everett would eventually be cured.

In April 2013 the time came to begin the one-year-old’s transplant workup.  A transplant social worker at Children’s Hospital Colorado suggested Kurt and Katherine reach out to the Children’s Organ Transplant Association (COTA) to research the possibility of fundraising for some of the significant transplant-related expenses this young family would face.

“As Everett’s transplant journey began, we had no idea how we were going to be able to pay all of the costs.  As soon as we called the COTA staff, we felt at peace.  COTA gave us hope that we would be able to take care of Everett’s health issues instead of worrying about the immense financial burden of his life-saving transplant,” said Katherine and Kurt.

COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers.  A COTA fundraising specialist traveled to Colorado to meet with the COTA in honor of Everett D volunteers and walked them through the entire process.

On May 6, 2013, Everett entered Children’s Hospital Colorado with his family’s ultimate hope that he would walk out months later — cured.  The toddler underwent 10 days of chemotherapy to get rid of his non-functioning immune system.  Everett received three different types of chemotherapy drugs.  He had a severe reaction to one of the drugs, which caused him to quit breathing and experience a seizure.  Once he received the ‘all clear’ from this episode, on May 17th Everett received a life-saving infusion of donor stem cells.

There were long days for this family following the transplant.  They watched his blood counts daily and waited for the new cells to take hold.  Katie recalls, “While holding my fragile boy during this time, there were so many emotions, but I mostly remember feeling a sense of hope.  Hope that he would live a long life.  Hope that soon the IVs and the constant medical attention would be over.  Hope that Everett would go to college.  Hope that he would meet the love of his life and get married, and hope that he would one day raise children.”

Throughout the days of waiting, Everett needed infusions of red blood cells and platelets because his body was not producing those due to the chemotherapy.  He was on a multitude of IV medications to keep him healthy and pain free during the process.  Everett experienced mild graft versus host disease (GVHD), which caused very high fevers that frightened Katherine and Kurt.  He also developed mucousitis that caused very painful sores in the baby’s mouth, throat and stomach.

However, once Everett’s cells engrafted, his counts increased rapidly.  At only 58 days post-transplant, Everett was released from the hospital to a nearby ‘clean living’ apartment where Kurt and Katherine could begin to recapture some normalcy for their family.

Back home in Loveland, Colorado, the Darby’s friends were working tirelessly to plan and orchestrate COTA fundraising events.  Garan Weilnau, a long-time friend and leader of the COTA fundraising effort said, “As a community of friends, we would do anything to help.  Helping out in this capacity was the most hands-on thing I could do.  I can’t be there to hold Everett’s hand or to hold Katherine’s hand, but I can be here making sure funds are raised and are available.”

At 100 days post transplant, Everett’s last IV medication was stopped and his central line was removed.  In March 2014, Everett received his final dose of IVIG.  His mediport was removed on April 15th and in May 2014, Everett began his vaccination schedule.  This is the final step needed for Everett to be declared cured.

When asked if they felt they had witnessed a miracle at any step in their transplant journey, Katherine replied, “Everett thrived despite all of the obstacles he faced due to his bone marrow transplant.  He wowed his doctors with quick engraftment of his donor cells and he continued to shock them with his amazing progress.  It is indeed a miracle that Everett has flown through his recovery process with relative ease and lots of smiles.”

Everett has reached every milestone at or ahead of schedule, and Kurt and Katherine say they could not feel more blessed and hopeful for his future as a happy, healthy boy.

Enjoy the fireworks, Kurt and Everett … this year they are for both of you!            

For more information about the Children’s Organ Transplant Association,

or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Posted on June 2nd, 2015 | No Comments »
2015 JUNE Isaac Buurstra

Isaac Buurstra, of Washington

Bloomington, Indiana – June 2, 2015 — June is a month full of family and fun … especially on the third weekend of the month when families gather to celebrate dads. Father’s Day has become a very special holiday for the Buurstra family of Snohomish, Washington. They experienced a miracle when their son, Isaac, received one of his daddy’s kidney’s … and a second chance at life.

Isaac’s transplant journey really began before he was born. Paige Buurstra, Isaac’s mom, had an ultrasound when she was 18 weeks pregnant that showed their unborn baby had a blockage in his urethra. This blockage had distended his bladder to about 10 times the normal size and threatened to take over his entire abdominal and chest cavity. Paige and Tim, Isaac’s dad, were told this would likely be fatal to the baby before, or shortly after, he was born.

Paige carried the baby for another 19 weeks, wondering every day if it would be the last day she would be the baby’s mom. During these 19 weeks, Paige and Tim met with specialists who told them what life would be like living with End Stage Renal Disease (ESRD) if the baby did survive. Paige remembers praying that the baby would not survive so he would not have to endure a lifetime of dealing with ESRD.

The week before his birth, Paige and Tim met with the prenatal team who would be caring for the baby in the Seattle Children’s Hospital neonatal intensive care unit. This was the first time Paige and Tim really understood the baby was dealing with other life-threatening issues. They were told the baby could either be born not able to breathe or urinate, and he would have about two hours of life … or he could come out screaming and urinating and could have a full life ahead of him. Miraculously, Isaac was born on February 6, 2012, both screaming and urinating.

After three days, Isaac underwent his first surgery to have his urethra valves removed. After 15 days in the hospital, Isaac came home, but he was heavily dependent on several medications and a feeding pump to prolong his natural kidney function as long as possible.

Even though dialysis was imminent, Paige found herself going to great lengths to prove the family’s life could continue as it had been prior to Isaac’s birth. Paige returned to work, the family of four (including Isaac’s older sister, Madelyn) took trips to the zoo and they all went out to dinner. Paige and Tim hoped there would be a few surgeries, a few short hospital stays, a dialysis machine that ran at night and hoped the entire situation would not significantly impede the family’s daily activity.

On April 16, 2012, those hopes were shattered. Rushed to the hospital, Isaac was barely able to pull a breath in and his blood pressure was three times higher than normal. Tim went to the chapel on one side of the hospital while Paige sat in the in the ICU lobby on the other — each of them crying the tears that only a parent facing the death of child can cry.

Tim remembers pleading with God, “If you are going to take him, take him now,” knowing the longer Isaac was with them, the harder it was on Isaac, and the harder it would be to lose him. That night Paige experienced a different kind of dying. She remembers, “It was the dying of idealism, of preference, of selfishness. I found myself resigning myself to God, ‘God, I will do anything, I will endure anything, for this child, if you let him live.’”

Isaac lived through the night and remained in the hospital for eight weeks, surviving many medical ups and downs in the process of preparing his tiny, three-month-old body for dialysis.

Paige recalls, “It’s hard to find words to describe ‘hospital life.’ The hospital is an hour away from our home. We traded off nights staying at the hospital with our son and staying at home with our daughter who was three at the time. Tim and I only spent a handful of nights together. We made friends with other people whose children were dying. I sat in a room with my friend as she held her daughter for the last few hours of her life. Their precious little girl had also been born with kidney failure. You ask yourself questions without answers like: Why does my son get to live while her daughter doesn’t? The other families’ stories will haunt me forever.”

When Isaac moved back home, Paige and Tim were hopeful life would normalize. That was not to be the case. Isaac was hooked to his dialysis machine 14 hours each day, which required a lot of juggling of the couple’s work schedules. In addition, Isaac’s medications had to be administered every six hours. On top of that, Isaac threw up several times a night. He had blood draws at the hospital every Monday and every Thursday. After about two months of this ‘new normal,’ Paige decided she had no choice but to quit her job.

The Buurstra family soon learned how hard life can be with a child on dialysis. Paige had to order supplies and medications from three suppliers and two pharmacies all at different times. One month of supplies would have filled a 12’x8’ wall, floor to ceiling. Bathing and changing a diaper was a daily ritual that required lots of time and patience due to Isaac’s tubes. Isaac threw up at least five to seven times per day, every day for the first year of his life. In order to minimize the vomiting, he had to be fed small amounts every 90 minutes and then was on a constant feed all night. He did not learn to eat, and because of that he did not learn to speak. He had speech and feeding therapy every other week. Isaac’s muscles did not develop normally, and despite having weekly physical therapy, he did not learn to crawl until he was 15 months old. Isaac was hospitalized for so long that he had to wear a helmet for six months to reshape his head.

According to Paige, “Life with a kid on dialysis was exhausting and isolating. There is no respite offered to dialysis parents. There was no one who could hook Isaac up to his machine. We couldn’t leave our house to just get away for the weekend. It was difficult to go out with friends and nearly impossible for Tim and I to go out on a date. We had to be home every night by 8 pm to get Isaac hooked up to his machine. There is nothing to compare to this type of isolation.”

Isaac had his transplant evaluation at 13 months. Paige and Tim were told Isaac needed to grow before donor evaluation could begin on both of them. It was at this point when Paige and Tim started to get a picture of what the financial burden would like for the family: gas expense of driving 100 miles roundtrip to the hospital three times a week … potentially eight weeks without Tim’s salary … clinic visits with multiple providers requiring co-pays … co-pays for blood labs … hundreds of dollars in medication co-pays every month. During this time of waiting for donor testing, the Buurstra family was introduced to the Children’s Organ Transplant Association (COTA).

COTA uniquely understands that parents who have a child or young adult facing a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of volunteers. A COTA fundraising specialist traveled to Washington to meet with the COTA for Isaac B volunteers and walked them through the entire process.

“We cannot imagine anything worse than having to worry about how to pay medical bills when your child is dying. COTA gave us hope because we could actually spend our energy focused on our family and not our finances. COTA has also given us hope for Isaac’s future … hope there will be funds available to help pay for medications and other transplant-related expenses when he can no longer be on our insurance,” they said.

It was soon discovered that both Paige and Tim were matches, which meant that either of them could proceed with testing to be Isaac’s donor. After much discussion, it was decided Tim would be Isaac’s kidney donor with the transplant date set for November 26, 2013.

Paige vividly remembers the actual transplant timeline. “We checked Isaac into the hospital on November 25th. When they took Isaac back for surgery the next morning around 9:30 am, I knew they had just made the first incision in Tim five miles down the road at the University of Washington. I was given updates every two hours. The only time I felt really nervous was between 1 pm and 3 pm. Tim’s kidney was supposed to arrive around 1 pm, but mid afternoon it still hadn’t arrived. Then Tim’s brother called and said the ambulance had just left with the kidney. As we were talking, I heard the ambulance arrive. Around 5:30 pm, the surgery team called to let me know that blood was flowing to Isaac’s new kidney. I took a deep breath for the first time in months, and I cried.”

Isaac has had a few serious infections since his transplant, but overall life is immeasurably better. Isaac is an active, happy boy who loves the outdoors and loves anything belonging to his big sister. There are still regular appointments at Seattle Children’s Hospital, but he is relatively stable for the first time in his life. Isaac still has speech therapy, feeding therapy and physical therapy, but he is rapidly making progress. According to Paige, the Buurstra family now takes trips to visit friends and family …. and they stay out late when they want. Paige adds, “When we decided to raise funds for transplant-related expenses through COTA, we had no idea the greatest gift would not be the monetary contributions, but the love that flowed from our community through our COTA team. It has been something almost supernatural.”

This is the Buurstra family’s journey so far, and they are well aware that a second transplant is likely somewhere down the road. But for this family, Isaac’s transplant has been a reprieve, a breath of air, for the first time since Isaac was born.

Truly the best Father’s Day gift.

For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1455017675toc@m1455017675ik1455017675.

Recent Posts