September 1, 2026 – September is National Sickle Cell Awareness Month. Approximately 100,000 Americans live with sickle cell disease, a chronic condition that causes red blood cells to harden and form a sickle shape. This results in severe and unpredictable pain, intense fatigue, frequent infections and more. It is often a lifelong condition. Each year, approximately 2,000 U.S. babies are born with sickle cell disease.
Kelvin and Sharon Brown of Elizabeth City, North Carolina, are part of this statistic. Their son, Kelvin Jr., was born on May 31, 2001, at Martin Army Community Hospital at Fort Benning, Georgia. Just a few weeks later in June 2001, their baby was diagnosed with sickle cell disease. Kelvin spent most of his young life in and out of doctors’ offices and hospitals because of pain crises and other problems associated with his sickle cell diagnosis. By the age of 14, Kelvin was in constant pain; his friend-filled teenage life came to an abrupt halt. His medical team said the time had come to decide on a bone marrow/stem cell transplant to give him a future. Kelvin’s parents knew they were going to need financial help to make it through all they were facing – the cost of the transplant itself and their need to temporarily relocate to Duke University Medical Center, which was 200 miles away from their home.
A transplant social worker at Duke encouraged the family to call the Children’s Organ Transplant Association (COTA) to see how they might be able to help. Nearly a decade ago, Sharon did just that. Today, she says it was the best call she could have made.
The Children’s Organ Transplant Association is a national nonprofit with an unwavering commitment to its mission to provide fundraising guidance and family support as The Trusted Leader Supporting Families … For a Lifetime. COTA was founded in April 1986 when an Indiana family could not afford the liver transplant their toddler son needed to survive. Their family members and friends canvassed neighborhoods and county fairs to collect cash and coins to help. That first group of volunteers formed the foundation of what would grow to become COTA. Today, 40 years later, COTA is committed to helping transplant families, like the Browns, avoid financial devastation.
Kelvin Brown received his stem cell transplant at Duke in May 2018, the day before his 17th birthday. He was featured in COTA’s 2020 Calendar, and COTA’s media story that was shared in June that year for World Sickle Cell Day. What Kelvin and his family did not know at that time was the fact that he would be facing several surgeries, numerous procedures and another transplant in the coming years.
Kelvin said, “Since my last COTA Calendar feature, I was blessed in November 2021 to receive a kidney from a living donor … after spending more than two years on dialysis. I am thrilled to say it has been a success, along with my stem cell transplant in 2018. I have IVIG treatments every six weeks to help prevent rejection. In that timeframe I have also had several major surgeries, but despite all of it I have been able to focus on my goals thanks to COTA.”
Kelvin’s mom, Sharon, explained when they first stepped into this transplant journey with Kelvin, there was absolutely no way to have known then what they know now. Specifically, what a huge gift it is to not worry about how to pay for the endless bills, co-pays and appointments. She described transplant-related expenses as ‘absolutely never ending.’ “COTA kept us out of the trenches and allowed us to spend our mental energy on Kelvin’s journey and our other son’s wellbeing,” she said.
“To this day, I remember our very first call with COTA,” Sharon said. “From that call we felt the ‘genuineness’ of this organization. No one at COTA cared about our demographics or financial standing. All that mattered to the staff was that we were a transplant family who needed help navigating the financial burdens we were facing. We instantly felt welcomed by a team of givers — the staff who are the heart of COTA.”
Sharon added, “COTA enters into a steadfast trust contract with each transplant family. Trust is the basis of every relationship COTA builds. Putting our trust in COTA was one of the best decisions we made.”
Looking back today, Sharon says the number one way COTA helped throughout the family’s long journey was removing their fears about the overwhelming financial burden. She points specifically to renovations that were needed at one point in Kelvin’s journey so they could move him home for peritoneal dialysis. “We were able to make the required adjustments without taking a second mortgage,” Sharon said. “During that period in his journey, we had to travel 3.5 hours back and forth for medical checkups and tests. COTA helped with our travel and food costs which was critical assistance for us during that very challenging time for us.”
“The second big blessing of being a COTA family was the organization’s reputation and the accountability,” Sharon added. “Friends, family members, coworkers and complete strangers were more than willing to donate because of COTA’s stellar reputation as a trustworthy 501(c)3 charity. That has been huge for our network of supporters.”
She also touts the incredible effort put forth by their COTA team of volunteers as another unanticipated blessing of working with the organization. The family found it unbelievable that COTA sent a staff trainer to their hometown to work with the volunteers. “Our team of COTA volunteers was amazing … period. Utilizing the tools and templates provided, they decided to go very big and sell COTA for Team Kelvin B t-shirts and bracelets. Their goal was to have all family, friends, coworkers and church members wearing one of each on stem cell transplant day. And boy did they get it done! We were at Duke and we were flooded … no bombarded .. with non-stop photos of people wearing them. It gave us so much strength and reassurance on that challenging day — and the many days to come. Thanks to COTA, we had an army of people praying for us and helping with never-ending transplant-related expenses.”
Today life is very different for Kelvin. He is nearly four hours away from home at the University of North Carolina Chapel Hill where he is studying communications and nutrition. There is no more dialysis and fewer medications, but still ongoing medical appointments. Sharon says now that Kelvin is out and living on his own, he realizes how much everything costs. She reminds him often of the COTA funds that will assist with transplant-related expenses. It is a gift, Sharon says, that medical bills do not add to the stress of making ends meet while living on his own. “Independence is important to Kelvin. Because of COTA for Kelvin B fundraising, he will likely not have to worry about medical bankruptcy. Transplant-related expenses are forever; they never stop as teenagers become adults and go out to live in the world.”
Sharon says COTA has been a solid safety net for her and her husband, too. She emphasized that through Kelvin’s lengthy transplant journey, “We did not lose our home. We did not lose our car. We did not lose our lives. We stayed married and we were always able to provide what Kelvin needed for transplant-related care. We were not alone.”
She continued, “It could have been so much worse. In all of the months we lived at the Ronald McDonald House, we witnessed families who actually did lose everything in the process of caring for their sick children. We heard endless stories of lost jobs … lost homes … depleted savings … and the worst? Lost children. We ate with these parents and we prayed with these parents when we would all come back from very long days at Duke. We are forever grateful that, because of God, COTA, our team of volunteers and Kelvin’s medical team, we did not experience devasting loss.”
Through it all, it has been important to Sharon that her family expresses its gratitude to the army of supporters who embraced them, supported them and wrapped them in prayers. Sharon and Kelvin Sr. committed to a project they called “Thank You Cards.” Every month, for nearly three years, they wrote personal notes to all of the COTA Miracle Makers who supported the COTA campaign. She said this project helped them stay grounded in appreciation and gave them hope. The family maintained a map of the United States and colored in each state from which donations to COTA in Kelvin’s honor were received. They eventually filled in 45 states, Canada and the Bahamas.
Sharon explained, “People often asked us why go to such lengths? Our answer was simple: Gratitude. We were overwhelmed by the hope, faith and love complete strangers were sending our way. Taking the time to say, ‘thank you’ felt like the least we could do in return.”
COTA’s unwavering commitment … a Lifetime of Support … continues to be important to the Brown family. They remember the gut punch they felt when they learned their baby boy was born with sickle cell disease. Not only did they have to navigate the uncertainty of the diagnosis, they also had to navigate the financial uncertainties associated with a lifetime of transplant-related expenses.
Becoming part of COTA eased many of their fears then, and today it continues to be a comfort … and will be for a lifetime. Today, Sharon uses these four attributes to describe Four Decades of COTA — Caring. Honest. Personal. Steadfast.
Throughout 2026, the Children’s Organ Transplant Association (COTA) is celebrating 40 years of its commitment to being “The Trusted Leader Supporting Families … For a Lifetime.” COTA is also celebrating four Decades of Donors — those who make the selfless decision to become organ and tissue donors and financial contributors who have helped raised more than $160 million for transplant-related expenses. COTA was founded by one Indiana family in 1986. Today, thousands of transplant families, like the Browns, rely on COTA’s guidance and support, which is provided at no cost.
