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.a1441284517toc@m1441284517ik1441284517).
Bloomington, 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.a1441284517toc@m1441284517ik1441284517.
Bloomington, 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.a1441284517toc@m1441284517ik1441284517.
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.a1441284517toc@m1441284517ik1441284517.
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.a1441284517toc@m1441284517ik1441284517.
Bloomington, Indiana — May 4, 2015 — May is National Cystic Fibrosis (CF) Awareness Month. More than 30,000 adults and kids in the United States have CF. In North Carolina, a teenage girl is winning the battle against CF thanks to her life-saving double lung transplant, which happened two years ago this month.
More than 10 million Americans are symptomless carriers of CF, and 1,000 new cases are diagnosed each year. For the Gradin/Goldwasser family of Durham, North Carolina, these statistics have been their reality since Corey was born in 1996, and then diagnosed with CF when she was two years old.
Corey’s father, Harlan, has been creating a narrative that describes Corey’s transplant journey, and what follows are excerpts from the story of Corey’s Second Wind.
It was the summer of 2009 when Cystic Fibrosis and MAC bacteria began the cycle of severe illness that made it clear there was only one path to potential survival for Corey, a bi-lateral lung transplant. A year later, when Corey turned 14, she became the youngest patient to enter the adult transplant program at Duke University Medical Center. Corey was to serve as a bridge patient in the adult transplant program who would link it with pediatric pulmonary. Corey went through rigorous pulmonary rehab for a significant period, all the while continuing to deteriorate.
The core of her day, every day of the week, revolved around doing nine hours of therapy to keep her breathing: the first couple of hours of the morning Corey did respiratory therapy; then to the next level of Pulmonary Rehabilitation boot camp for two-to-three hours every day; then Corey returned home for another round of respiratory therapy, which she repeated later in the evening. Obviously, her health care for her physical illnesses and disability dramatically interfered with her ability to do anything else.
When she was almost at her worst we knew it was time to identify another transplant program, and arrangements were made with St. Louis Children’s Hospital in Missouri. Corey’s transplant specialists made it possible for insurance to cover the operation because without insurance, we would not have been accepted at St. Louis. I think this is when the reality of the situation made the importance of the Children’s Organ Transplant Association (COTA) undeniable to us; it was absolutely critical and would make ‘living’ for all of us possible during the rest of Corey’s journey.
So in March 2013, on a cold, windy Sunday morning, Corey, her mother Elise, and a dear friend, boarded the small jet of Children’s Flight for Hope that would take them to St. Louis for Corey to be evaluated as a candidate for transplant. I was unable to go due to recuperating from major retinal surgery, but I joined them in early May.
How we felt: scared, dread, fear, hope, last hope.
It was cold and snowing heavily when Corey, Elise and Margaret landed in St. Louis. Take the fear, anxiety, and hope and multiply it — they were in a new city they knew nothing about, needed to be at the hospital at 7:30 in the morning in bad weather, and were to begin an exhaustive week of interviews and medical tests to determine if Corey was going to be accepted into the pediatric transplant program.
The whole world was at stake, so it felt like to all of us.
After a week of intensive evaluation, Corey became too sick to travel and had to be hospitalized. This began our stay of six months in St. Louis. For the first couple of months, Corey had not yet been accepted into the transplant program. It was a complex, frustrating, and anguishing time. Our daughter was dying.
The St. Louis Children’s Hospital medical team worked with us to find a pathway that would lead to transplant, all of us learning to meet each other. A transplant is like a marriage: everyone must be completely committed to each other and to the process. Corey was listed her in mid-May. It was Corey’s fierce, unbending spirit, and sheer will to live that kept her breathing, in spite of having no lungs left.
On May 29th and May 30th of 2013, our beloved daughter Corey had surgery for a double lung transplant. It could not have come too soon. The attending pulmonologist who examined her lungs under the microscope said she must have had gills because there was nothing that could have gone through the lungs. Indeed, as we know now, she was running out of time.
Several days after her surgery, we watched her walk with her new lungs for the first time. It was awesome, thrilling and very powerful to witness.
Due to a terrible summer cold, I was unable to be with Corey for several weeks. However, I was able to return to her recovery room on Father’s Day. A father saw the daughter he knew from a few years ago when he got to the hospital; and she was able to take a good 20 minute walk with him, talking about the future, how she might raise kids, and what she wanted in a car. Pretty stunning, all things considered.
At the end of June, Corey was doing well enough to be discharged.
While we were doing well, we had some bumps. Her biopsy reported no indication of organ rejection. Sometime in late July 2013, Corey had her pH probe to learn if she had acid reflux, which is dangerous to new lungs. It involved a tube through the nose and down the throat. She hates this procedure more than any other. Her comment to the GI was, “Why not do something more pleasant, like just shoot me?” The GI replied she wanted to keep Corey around. But, Corey said, “I didn’t say shoot me in the head or the heart.” Some classic Corey.
Her progress was amazing. We were able to leave St. Louis Children’s Hospital on September 1st and return home to North Carolina. Corey is very good — feeling well, ecstatic that she is not allergic to dogs. On her 17th birthday in November of 2013 we were stunned because we did not think she would have another birthday, but she did … and she is a rock star. She is flourishing. After her ‘transversary’ she still has no rejection, no infection. Unfathomable.
The COTA for Corey G team of volunteers worked tirelessly to raise funds for transplant-related expenses that will be with Corey for her lifetime. Over their months of planning and holding fundraising events, numerous articles and blogs were written about this amazing COTA teen. Corey has been described as being sharp and funny … having a blunt way of putting things … living life to the fullest.
Now, post-transplant and back in North Carolina, Corey is working hard to make up for lost time. Corey will always have to take medications to maintain her new lungs, and to make sure her body does not reject them. Corey swims, does yoga and exercises as part of her physical therapy. Early on in her battle against CF, she lost her hearing due to the medications she was taking. Yet, she is a powerful communicator through her writing. When comparing life pre-transplant and post-transplant, Corey writes, “To explain the drastic change in my health, I need to give some context: I was dying. My lungs were deteriorating rapidly and I couldn’t breathe on my own or move much at all. Getting up in the morning took significant effort. To go out and do something minor, like walking around a grocery store, was exhausting.”
According to Corey, “The difference now is huge.”
Today, Corey is reveling in her favorite things, “spending time with dogs, cooking, shopping, spending time with loved ones and engaging in meaningful and stimulating conversation.” Corey’s hope for the future, short term, “is to live and thrive independently, renting my own home an acquiring a service dog for a while before college. I want nothing more than to be self sufficient.” Long term, Corey wants, “to learn about a career as a college professor teaching history to students in courses people choose to take, and finding a life partner who is amazing beyond all reason.” Also on her list of ambitions is to write Young Adult fiction (among other genres) featuring a wide representation in characters.
Bloomington, Indiana — April 6, 2015 — April is national Donate Life Month. Rest assured that Crosby Hoots’ parents (and likely the entire town of Mt. Zion, Illinois) will be promoting organ donor awareness throughout this month as a way to thank the family who donated their child’s liver — a selfless act that saved Crosby’s life.
Crosby began his life on April 20, 2012, when Philip and Gina Hoots traveled to Indianapolis for their second attempt at in vitro fertilization. They were hoping for success this time around and 14 days later, Gina got the call with the news they had been waiting for … she was pregnant. Crosby Steele Hoots arrived right on schedule on January 7, 2013, weighing 7 pounds 12 ounces.
Gina and Phillip were ecstatic. However, on January 9th their joy turned to anxiety when one of the routine newborn screening lab results showed an elevation in Crosby’s direct bilirubin levels. He was air-lifted to the neonatal intensive care unit in a nearby city where he was kept for seven long days of grueling medical tests. Finally, Gina and Phillip heard the news they had come to fear — the specialists suspected biliary atresia. The diagnosis was confirmed in mid-March and Crosby underwent a surgery called the Kasai procedure, which is an operation to create an open duct so bile can drain from the liver. The Kasai procedure is not a cure for biliary atresia, but it does allow babies to grow and have fairly good health for several years.
Unfortunately, Crosby’s Kasai was unsuccessful, and Gina and Phillip were told a liver transplant would be his only chance of survival.
Gina blogged, “I never thought Crosby would be facing a life-threatening diagnosis. All medical problems can be fixed, right? We are so lucky to be living in today’s world. Sigh of relief, right? Not so fast. Ten percent of babies die from biliary atresia. My baby has a real risk of death.”
In early June, Gina blogged, “I think I’ve been living in denial the last couple of months. Sure we still keep our doctors’ appointments. Yes, we are still giving Crosby mega doses of vitamins and antibiotics every day. And yes, we keep mixing high calorie formula to ensure Crosby gets every bit of nutrition he can. I keep writing this blog and updating everyone on the latest. He’s so happy and looks so healthy to me. We still can’t SEE his illness. We can see the jaundice and floppy muscles and teeny tiny body, but we think he is pretty perfect the way he is.”
By the end of June, Crosby’s team of specialists told Gina and Phillip it was time for his transplant evaluation at St. Louis Children’s Hospital. Gina had heard about the Children’s Organ Transplant Association (COTA) from other liver transplant parents she had encountered, and she decided it was time to reach out and do some research. She and Phillip knew the financial impact of the transplant was going to be huge. The Hoots family had great medical insurance, but they soon discovered there were so many out-of-pocket expenses, including co-pays, prescriptions, loss of income and travel/lodging.
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 travelled to the Hoots’ hometown in mid-July and by August, their COTA team of volunteers already had organized a huge COTA fundraiser in honor of Crosby.
The COTA in honor of Crosby H volunteer team worked tirelessly to tell his story using area media and various social media platforms. This resulted in numerous individuals who wanted to give Crosby the gift of life by donating a portion of their liver.
By the end of summer Gina blogged, “So we wait. And wait. And enjoy our time with him. Keep the bag packed in case we get the call. Not really expecting the phone to ring. Stay busy with all of the details of daily life. Now that he has been on the list for some time, we are ready to move forward. We are ready for the call. We are ready for Crosby to begin the next chapter of his very bright and promising life.”
During the fall months, Crosby continued to hold his own. The feeding tube began to deliver his nutrition during the nighttime hours and Crosby started sleeping through the night. The best news? Crosby started to grow, which caused great improvements in his muscle tone and his coordination. In fact, Crosby was healthy enough that his liver team allowed him to travel to Florida over the Christmas holiday to visit his grandparents.
January 7, 2014, was Crosby’s first birthday, but because of huge snow storms and Crosby’s struggles with Respiratory Syncytial Virus (RSV), his party had to be postponed indefinitely. Instead of being at home celebrating his birthday, Crosby was rushed via ambulance to St. Louis. And then it happened on January 31st. Gina and Phillip got the call that a liver was available.
Gina blogged, “We drove home, filled up the gas tank, dropped the dog off at the vet and headed towards St. Louis. The team was waiting for us when we arrived (3 hours and 45 minutes later) and the process began. Labs, Chest X-ray, EKG all done. We had consults with the surgeon and anesthesiologist. We had a few vague updates on the donor. When all was said and done it was decided the donor was going into surgery at 0500 and Crosby would be headed to surgery around 0700.”
“Two sets of Grandparents arrived. The third set was there via Skype. The night was uneventful; I’m glad we had that time to prepare. I made sure all the household bills were paid up for the next few weeks so I wouldn’t have to worry about missing a payment. COTA was contacted. Everyone was ready to move forward. A few work obligations were finished up and it was time to get a little rest before the morning arrived.”
“At 6:45 am we went down to pre-op holding to get ready for surgery. Anesthesia met us and did a quick assessment. While they were in the room, they got paged away. When they returned, they gave us the bad news — the liver wasn’t the perfect one for Crosby. The original intention was to split the liver into two pieces with the large lobe going to an adult patient and the smaller lobe going to Crosby. Something about the liver didn’t allow it to be split in a way that would work for Crosby. The happy news from all of that is that the donor was able to give his liver, lungs, kidneys, and heart to deserving patients.”
Crosby, Gina and Phillip returned to Mt. Zion to, once again, wait.
On June 13, 2014, the wait was finally over when Gina and Phillip were told a perfect liver was available. They packed up, once again, for an extended stay and travelled to St. Louis. Crosby received his new liver, and his second chance at life, on June 14th. The COTA for Crosby H Facebook effort posted the opportunity for their supporters to purchase a t-shirt to raise funds for transplant-related expenses. The t-shirt read: “Of course I’m an Organ Donor … Who wouldn’t want a piece of this?” According to Gina, one very important thing that happened while the family waited for Crosby to receive his new liver was the COTA in honor of Crosby H team of volunteers continued planning and holding fundraisers for transplant-related expenses.
“COTA continues to give us hope by allowing us to focus on Crosby’s health and well-being. We have learned that along with the scare of having an ill child, the financial burden is immense. We also struggled with the extended, unpaid leaves from our jobs. COTA has alleviated a huge part of our stress by eliminating the worry about finances, which has given us hope that our family can survive this transplant journey without losing everything,” said Gina and Phillip.
One day after Crosby’s life-saving transplant, Gina blogged, “We are completely overwhelmed by the outpouring of prayers, support and messages when Crosby received his second chance at life. It will never be forgotten and we will continue to pay it forward in the years to come.”
Nationwide, April is the month that is dedicated to raising awareness about the need for registered organ donors. Many COTA families are waiting to receive that life-saving call the Hoots family received less than a year ago. For more information about how you can become a registered organ donor, go to http://www.donatelife.com/Donatelife/Register.html.
March is National Kidney Month, which is month-long, awareness-raising grassroots effort that is utilized to spread the word nationwide about the importance of kidney health. A Georgia family knows firsthand about the life-saving difference healthy kidneys can make.
Rebecca and Seth Harding of Cumming, Georgia, remember December 2008 as a month of surprises. Rebecca was 15 weeks pregnant with their first child, and they had just moved cross country to the Atlanta area. On the first day in their new city, Rebecca found herself in a High Risk Imaging Clinic having an ultrasound test done after a routine prenatal exam identified, ‘a spot worth checking into.’ After several doctor visits and many more tests, their baby boy was diagnosed in utero with Posterior Urethral Valves (PUV), which is an extremely rare condition that affects about 15 of every million births. Rebecca and Seth were told she would likely miscarry before the baby reached 20 weeks.
Rebecca spent the final two months of pregnancy living in the high risk pregnancy hospital ward where Ephraim was ultimately born via cesarean section. The day of Ephraim’s birth (May 18, 2009) was oddly peaceful, but Seth was told before entering the delivery room that Ephraim would not likely come out of the room alive. Fortunately, that was not to be the case.
Ephraim spent his first month in the NICU at Children’s Hospital of Atlanta where he underwent tests, surgical procedures and constant monitoring of vitals and lab work. The doctors were puzzled. His kidneys were operating at a dangerously crippled rate, his urine was bloody and concentrated, but both his kidneys and urinary tract were technically functioning. The decision was made to forego dialysis at this point and just wait to see what his body would do. Despite the odds, Ephraim maintained that level of functioning for several years without dialysis.
Those years, however, were not without their share of drama. Those years saw multiple surgeries for multiple reasons, the introduction of feeding tubes/machines, numerous hospitalizations for urinary tract infections, kidney infections, severe dehydration, dangerous lab results — the Harding’s home was turned into a medical clinic. But Ephraim’s kidneys, despite the lack of any growth, refused to completely fail.
In March of 2013, Ephraim’s health took a severe turn for the worse and the transplant conversation became reality. By May, Ephraim entered End Stage Renal Failure and he was placed on Hemodialysis three times a week. It was during these upside down days that the family was introduced to the Children’s Organ Transplant Association (COTA). Rebecca remembers that COTA quickly became one of the few bright spots in a life filled with doctors, hospitals and insurance companies.
According to Rebecca, “After our son’s kidneys failed and he was diagnosed with End Stage Renal Failure we were overwhelmed by the endless burdens of Hemodialysis, life-saving medications, blood line infections, countless hospital stays and the bills that soon followed. We were fighting with insurance companies, drowning in paperwork and drowning in fear. We were already so overwhelmed simply keeping our family together and keeping Ephraim alive that the thought of figuring out how to pay the bills was a monumental struggle. We knew we weren’t the only family to ever face such difficulties. My husband and I made the phone call that changed everything.”
“From the moment of first contact COTA sparked hope in our hearts that one day our son’s story would be heard and that the people in our community would be moved to action, even if that meant becoming a registered organ donor. We were astonished at how caring, loving and knowledgeable everyone at COTA was. With each phone call, email or text the staff’s first priority was always our family and we could sense their genuine concern for our son. They always asked for updates on how he was doing, how we were faring as a family and they constantly provided resources we did not know existed. They answered every question we had and made themselves available at a moment’s notice to ensure we and our COTA volunteers were taken care of.”
“Because of the boundless generosity of our COTA volunteers and the unparalleled support from COTA, our family’s story spread. Individuals from all over the world offered to become our son’s kidney donor after my husband and I were ruled out as candidates; people were writing and calling saying they were moved to sign their donor cards so one day they could save a life like Ephraim’s; and a well established film crew out of Los Angeles offered to put a short video together for us to use to spread awareness.”
“Once we became a COTA family doors began to open, opportunities began to present themselves and hope … hope began to grow.”
After numerous living donor candidates had been tested and turned away, Seth and Rebecca were approached by Ephraim’s Sunday school teacher, Veronica, who asked if she could be tested. The Harding family’s world changed at that moment. Her tests were expedited and the process went faster than it had with all the other potential donors. She was a perfect match and on October 24, 2013, she donated one of her kidneys to Ephraim.
“COTA has celebrated with us every step of the way and has taken the monumental financial struggle and turned it in to the biggest set of blessings our family has ever seen. We might be considered one of COTA’s families but we can assure you, it is the other way around. We consider COTA an extension of our own family now,” said Rebecca and Seth.
“Thank you, Children’s Organ Transplant Association, for giving us so much more than an avenue to raise funds and awareness … you gave us an avenue for hope.”
Today, Ephraim fights viruses and infections, but he is currently stable with a very positive prognosis. In just a few months when he celebrates his 6th birthday with sisters Elliana and Evelyn, he will be eating lots of his favorite foods, including Chick-fil-A chicken nuggets and pizza. He will likely be opening shiny boxes full of cars, trucks and trains, while wearing his favorite transplant surgeon dress-up costume.
When asked about his hope for the future, Ephraim has an answer. Ephraim hopes that Sulley (his transplanted kidney) lives a long and happy life, and keeps him out of the hospital and off dialysis forever.
COTA hopes that, too, Ephraim!
Ethan David Osterman was born on February 17, 2012 to his adoring parents, Lauren and Jake — and with a full team of specialists in the room at Children’s Medical Center of Dallas. That is because even before Ethan made his appearance, both Lauren and Jake knew this little boy was going to face an uphill battle to survive. In utero, Ethan was diagnosed with a rare congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). Also while in utero, Lauren and Jake named their yet unborn baby Ethan because the name means strong, safe and long-lived.
On February 25th at just eight days old, baby Ethan had his first open heart surgery. After this surgery, Ethan was kept on paralyzing medication and monitored while his chest remained open for approximately 48 hours. When he woke, he was given a breathing apparatus and a feeding tube via his tiny nose. For the next several weeks, Ethan had many complications and challenges to overcome, but he did so and his parents soon learned he was a strong, brave and resilient baby boy.
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Bloomington, IndianaJanuary is a month the Kiefer family of Jackson, Wisconsin, will not soon forget. Just two years ago in January, this family’s lives were turned upside down for the second time with devastating health news about their little girl, Kennedy.
Kennedy Elizabeth Kiefer was born October 9, 2009, to ecstatic parents, Eric and Jennifer. They already had a beautiful little boy, Lukas, at home so Kennedy’s arrival was another perfect chapter in this young family’s story. For the first eight months of Kennedy’s life, the Kiefers actually described everything as ‘perfect.’ According to Jennifer, “We had two beautiful and healthy kids, a great marriage, a new home and the whole world was truly in front of us.”
Just before Kennedy’s first birthday, Jennifer and Eric noticed her abdomen was a bit distended and hard to the touch, but they decided it was likely increased weight and baby fat. One of Kennedy’s daycare teachers also noticed the baby’s abdomen and encouraged Jennifer and Eric to get her checked before upcoming business trips that were scheduled for both of them. With their urging, Kennedy’s pediatrician ordered an x-ray and an ultrasound of her abdomen. The x-ray came back negative, so both Eric and Jennifer left for their business travel, knowing the ultrasound would be performed upon Jennifer’s return.
With Eric still out of town, Jennifer took Kennedy to the ultrasound appointment. She knew something was wrong when the pediatrician asked to discuss the results in person that same day. Jennifer was told Kennedy had a malignant tumor, called a Wilms tumor, in her right kidney. Baby Kennedy had cancer, and Jennifer was all alone when she heard this terrible diagnosis. Eric, who had to hear this completely unexpected news over the telephone, rushed home from his business trip.
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