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!
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1427396930toc@m1427396930ik1427396930.
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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Bloomington, IndianaFor many, December is the month to focus on gifts … those boxed and wrapped in shiny paper and beautiful bows. For one North Carolina family, December is the month to celebrate the ultimate gift … the gift of life. A gift both of their sons have now received from families who during a time of unthinkable sorrow made a life-saving decision.
On Christmas morning, Cisco and Cora Ocampo of Matthews, North Carolina, are going to be sitting around their tree watching the extreme excitement in their two, healthy boys’ eyes while thanking God for the craziness. Only a few years ago, this morning of laughter, shredded paper and unbridled energy was a mere dream.
Cisco and Cora’s second son, Jordan, was born on July 25, 2009. He was a happy and beautiful baby; the Ocampos felt blessed that their family was complete with their little Jordan, and his older brother, Luke. However, at Jordan’s 12-month well-baby check, Cisco and Cora’s world turned upside down when they were told he was in kidney failure. He was rushed to the ICU and placed on emergency hemodialysis. Eventually, Cisco and Cora received special training so that Jordan could receive dialysis at home. Once he was settled at home on dialysis the family started contemplating the inevitable … Jordan would one day require a kidney transplant to be able to survive long-term.
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Bloomington, IndianaAs the chill of November sets in, many thoughts turn to holiday planning, Thanksgiving preparations and gratitude. For a COTA family in Goldsboro, North Carolina, their Thanksgiving table will be surrounded by loved ones who truly embrace the essence of gratitude.
Abigail Susan Keen was born on June 30, 1996, to adoring parents, Deon and Randy. She was the youngest Keen, following older sister, Daranda, and older brother, Matthew. The Keen Family enjoyed life to the fullest as their children grew over the years. Tragedy first struck the family in 2005 when Randy passed away after a short battle with liver cancer. Then in late 2009 during a school physical, it was discovered that Abby’s liver and spleen were enlarged. Thirteen-year-old Abby was admitted to the hospital for further testing. The family was told that Abby had cirrhosis of the liver, but the cause was unknown. In November 2009 Abby was admitted to Children’s Hospital of Pittsburgh where the cause of the cirrhosis was diagnosed as Primary Sclerosing Cholangitis (PSC). The only known treatment for PSC is a life-saving liver transplant. The news was devastating for this family, which had still not recovered from their husband’s/father’s death.
Now over two years post-transplant, Deon Keen shares these grateful thoughts about the role COTA has played in Abby’s transplant journey:
From the fall of 2009 my mind was a wreck. As a single parent I was faced with the question, ‘How would we manage?’ My financial obligation for Abby’s liver transplant would be more than $50,000. That total did not include my mortgage, household expenses, insurance, or anything else. I was in a frantic state of mind. I was faced with two giants: the first, my daughter needed a life-saving liver transplant, and the second, how would I financially provide for all our needs? My husband (Abby’s father) passed away in 2005 after a short battle with liver cancer. Our entire family was still coming to terms with his passing when we were suddenly faced with the possibility of losing Abby.
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Bloomington, IndianaOctober is the month full of raking leaves, falling temperatures, store shelves stuffed with candy and kids in costumes. This Halloween, a Seattle, Washington, family is not only participating in the traditions of candy and costumes, but is also celebrating the two-year transplant anniversary of their four-year-old daughter.
Evelyn Sherman was born on November 19, 2009, the second daughter for her parents, Keith and Julianne. Keith and Julianne instantly fell in love with the beautiful baby, as they had with their oldest daughter, Marilouise, and as they would with their youngest daughter, Ada Claire.
Julianne remembers that Evelyn was about nine months old when she started falling off the growth chart. Julianne felt it had something to do with her breast milk supply, but when they tried to beef up the baby’s diet, there was still little to no growth. There were some other signs that something might be wrong with Evelyn. She was born with a sixth toe and she had wine stains on her skin. When Evelyn was 15 months old, she was diagnosed with renal dysplasia, which meant her kidney had developed incorrectly. Julianne says when the doctors told she and Keith the news that there was something wrong with Evelyn’s kidney, she could not comprehend what they were being told because she just did not want to believe they had a critically ill child.
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Bloomington, IndianaSeptember is back-to-school for many students across the country. For one Glendale, Arizona, family this back-to-school month will be filled with excitement as their post-transplant daughter returns to her second year of college. Just a few short years ago, this family did not know if their daughter would ever make it to year one of college.
Danielle “DJ” Rodriguez remembers being nervous as she was getting ready to start her junior year of high school. But little did her parents, Danny and April, know about how stressful DJ’s junior year was actually going to be. On the second day of junior year in August of 2011 and after experiencing lower back pain, DJ was taken to the doctor. Within days it was discovered she was in liver failure. The diagnosis? Autoimmune hepatitis. A liver transplant was her only chance at survival.
According to April Rodriguez, “Having our daughter diagnosed with a terminal disease and then learning she needed a liver transplant to survive was devastating. We struggled for the first few months trying to figure out how our life would go on from there. We tried to grasp the reality that schedules would have to change, priorities would have to be reassessed and family life would be disrupted. We soon used up all of our paid time off and faced the reality that significant family income was going to be lost as one parent would be needed for DJ’s continual care and doctors’ visits. Through all of this, we met with DJ’s doctors and the hospital financial representatives. We learned of the astronomical commitment and cost of a transplant and found out that our salaries were not going to begin to cover transplant-related expenses.”
By the last quarter of DJ’s junior year, it was evident that she needed a new liver … and she needed it quickly. The search for a perfect living liver donor match began. Many around her were inspired by DJ’s positive attitude and willingness to fight. The family did experience many setbacks during this process including insurance issues and the inability to locate a liver donor. April’s best friend and DJ’s Godmother volunteered to be tested, and she was the perfect match.
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The first week of August is designated as National Minority Donor Awareness Week, which is a seven-day period that one Cary, North Carolina, family will be celebrating with joy and gratitude. If a suitable heart donor had not become available, it is possible their son would not be marching with the band, playing trombone, listening to music and watching movies … just like other teenagers will be doing this month.
On September 11, 1995, Lucas Thomas Santos was born with a congenital heart disease called Ebstein Anomaly. First-time parents, Larry and Simone, brought him home 15 days after he was born, and doctors were able to keep his condition under control with just one medication. For more than a decade, Larry and Simone were able to pretend there was nothing seriously wrong with their active boy who played basketball, baseball and loved to swim. The Ebstein Anomaly rarely made its presence known during those early years.
But when Lucas turned 13, his heart started working overtime and began enlarging. Doctors determined that Lucas would need to undergo heart surgery for him to survive. On March 30, 2009, after six hours of open heart surgery, Larry and Simone were told the surgeons had reconstructed his heart valve, opened a shunt and implanted a pacemaker. Beating all odds, Lucas was discharged two weeks later and he began his freshman year at Cary High School as a trombonist in the school’s marching band. For the next two years, he was a ‘normal’ high school student who was busy with his classes, his music and his friends.
On September 25, 2012, all of that changed when Lucas was rushed to the emergency room at Duke University Medical Center with severe chest pains. Once he was stabilized, the medical team determined that Lucas would not leave the hospital until he received a new heart. Larry, Simone and Lucas’ sister, Mikayla, were not anticipating this news; however, they trusted that God was in control. Within days of Lucas being placed on life-saving drugs, a social worker at Duke told the family about the Children’s Organ Transplant Association (COTA). According to Simone, “The support from friends and our church family was amazing and a COTA campaign in honor of Lucas was launched.”
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The Children’s Organ Transplant Association (COTA) is pleased to announce an arrangement with Walgreens through its Transplant Specialty Network. The network currently consists of 55 Walgreens pharmacies and features specially trained pharmacists and staff with an in-depth understanding of the transplant process, including management of the complicated medications and their potential side effects. It can provide expert guidance and personalized, ongoing support to families facing the lifelong challenge of ensuring their children stay healthy and continue taking vital medications that prevent the body from rejecting life-saving organs.
The following are among the many supportive services Walgreens Transplant Specialty Network pharmacies provide to transplant patients and their families:
During their follow-up calls to the patient, Walgreens emphasizes the importance of taking medications as prescribed. They explain the signs of rejection, give advice on how to manage side effects and provide guidance if the dosage or medication changes. Walgreens also works closely with the patient’s doctors and other caregivers to enable seamless, quality care. The goal is to help prevent rejection of the organ, avoid infection and keep the patient healthy and out of the hospital.
For more information, contact COTA Family Services at 800.366.2682 or via email at gro.a1427396930toc@s1427396930ecivr1427396930eSyli1427396930maF1427396930. COTA provides transplant-related financial assistance to eligible patients, regardless of their choice of provider.