November 2, 2026 – November is the month dedicated to gratitude. Gratitude was the basis for the formation of the Children’s Organ Transplant Association. COTA was founded in 1986 when an Indiana family could not afford the liver transplant their toddler son needed to survive. They were very grateful when 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, COTA is a national nonprofit with an unwavering commitment to be The Trusted Leader Supporting Families … For a Lifetime.
November is also when World Cord Blood Day was launched in 2017 to highlight the more than 35,000 cord blood transplants performed since 1988. The Lee Family of Scottsdale, Arizona, is grateful for both of these milestones – cord blood transplantation science and COTA’s founding.
Sophie Lee was born in 2010 in Taiwan and was adopted by Judy and Tony Lee when she was 14 months old. At Sophie’s five-year-old medical checkup, her pediatrician noticed some of her white cell counts and blood cell sizes were out of normal range. She was referred to a hematologist for more tests. Sophie was diagnosed with a genetic bone marrow disorder called Myelodysplatic Syndrome (MDS). Judy and Tony were told Sophie’s only treatment option was a bone marrow transplant that needed to be done soon before her MDS manifested into leukemia.
Sophie’s bone marrow testing found a cord blood match, but a cord blood transplant meant a longer engraftment period, more expenses, a longer hospital stay and a more challenging recovery period. The Lees took Sophie out of Kindergarten to move forward, and Sophie was admitted to Phoenix Children’s Hospital to start the cord blood process. Sophie’s parents remain very grateful that a decade ago a Phoenix transplant family whose son underwent a bone marrow transplant suggested the Lees call the Children’s Organ Transplant Association (COTA) to learn more about how the organization might be able to help.
The Lees became part of the COTA Family in early February 2016, and Sophie was admitted to Phoenix Children’s Hospital later that month. She received her cord blood transplant on March 4, 2016.
Sophie was featured in COTA’s 2018 Calendar, and the organization’s media story that was shared throughout November that year. Sophie was eight years old; today she is 16 and a freshman in high school. Tony said, “The good news is that the further we get from her cord blood transplant, we do not have as much follow-up care. Primarily just annual checkups close to home at Phoenix Children’s so we do not have to travel far for her post-transplant care. Sophie is not missing much school, and Judy and I are not missing lots of work like we did right after her cord blood transplant.”
Tony explained that Sophie has had to overcome some post-transplant setbacks over the past several years. In June 2023, she had a severe case of pneumonia that evolved into sepsis and required her to be admitted to the ICU. While the cause was unknown, Tony said her immune system is compromised because of the transplant. She has had nocturnal seizures that have resulted in brain scarring and other complications. “Because Sophie is adopted, we simply do not have family medical history to help us figure everything out medically,” Tony explained. “The good news? Her transplant was successful and Sophie is in remission.”
When Tony speaks about their family’s transplant journey, he always includes COTA. “With everything we have gone through with Sophie, COTA has reduced so much of the pressure on our family. We almost instantly feel the stress dissipating when we talk to someone from COTA. COTA has allowed us to focus on Sophie – it has literally helped us raise her in many ways,” he said. “COTA has removed so much stress and has allowed us to breathe easier. With so many unknowns on her journey, COTA has given us peace of mind.”
Tony explained that a transplant journey like the one they are travelling with Sophie is stress-filled for many reasons, including transplant-related expenses. He said some of Sophie’s post-transplant care has required long inpatient stays, sometimes at a cost of up to $10,000 per day. Tony also explained Sophie’s medications are extremely expensive. The good news? Tony and Judy have very good health insurance coverage. It is hard for him to imagine their financial reality if they did not have solid insurance.
Looking back today, Tony said, “We knew absolutely nothing about COTA when we Sophie was diagnosed at Phoenix Children’s. I remember getting lots of information from our transplant social worker, including information about COTA. She told us, ‘COTA does not take money from a transplant family and does take advantage of a transplant family. COTA can be a big help to your family.’”
Tony and Judy, who are both medical practitioners, never forgot her words. They are both extremely grateful they became part of the COTA Family a decade ago in 2016. “My first COTA ‘aha’ moment came with the first bill that arrived following Sophie’s cord blood transplant at Phoenix Children’s,” Tony said. “We have good insurance. When you see what you still owe after insurance has paid its portion is unnerving and your mind immediately drifts to thoughts of a lifetime of medical debt.”
“And then you calm down when you remember COTA funds can be used for a wide variety of transplant-related expenses,” he said. “No one really tells you about the extent of medical debt your family could be facing … especially when you consider transplant-related expenses will be with your child or teen for a lifetime. A lifetime of transplant-related expenses is hard to contemplate in many ways.”
COTA also helped Judy and Tony in another meaningful way. He remembers the COTA for Sophie L volunteer team organized a big event; it was great for the family to attend and see the vast outpouring of support. “Seeing our close friends show up to participate and help was heartwarming — something we will never forget,” Tony said. “COTA made all of that possible with their guidance and resources. During a time of fear in Sophie’s journey, this event … these people … were a big ray of light, a source of hope, for our family.”
Today, Sophie is literally on the go and living her best life. “She is balancing being independent while continuing to be the center of her parents’ universe,” Tony said. She loves playing ice hockey and looks forward to practicing each week and being on the ice for each game. Sophie has played every position on the ice including goalie. Her second love? Skiing. (Tony said to remember the family lives in Arizona.) She loves the speed of skiing and has started to do aerial jumps. She excels at the piano and has a strong interest in percussion. One of her biggest passions is playing snare drum in the marching band. And now that her critical medical issues are behind her, the family has started travelling a lot more. Tony said he and Judy are trying to take advantage of the new life she has been given since her transplant … and they are grateful to have the support of COTA through it all.
“COTA allows us to focus on Sophie and enjoy every triumph with her,” Tony said. “The pressure is immense when you are on a transplant journey with your child. There is constant stress and fear. It is really a big deal to have something as big as financial panic taken off your plate because of COTA. It is a gift to be able to breathe a little easier and not constantly worry about the never-ending medical bills.”
He continued, “COTA’s commitment to a lifetime of support is a comfort to us as parents. COTA’s support will grow with Sophie and will hopefully take a big stress off her plate when she becomes an adult – just like it has for us. Transplant-related medical bills will likely never stop for Sophie. As a parent, knowing you have done something … have become part of an organization … that is likely going to remove the fear of medical debt from her adulthood is an indescribable relief.”
“It is important to realize that COTA is not just here to help the parents who decide to become part of the organization, but it is an investment so as a COTA Kid becomes a COTA Adult they have peace of mind and do not have to worry about how to pay for transplant-related expenses,” Tony said. “To us, that is the true gift of COTA and they have been giving that gift to transplant families for 40 years.”
The best update since the Lee’s COTA story in 2018? Sophie is doing really well in high school. She is happy most of the time, Tony shared. She is currently taking no transplant-related medications, which is amazing. Sophie’s journey is full of adventure and joy. Sophie has a future – a future that contains a lifetime of support with transplant-related expenses thanks to COTA.
The Lee family is extremely grateful.
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 Lees, rely on COTA’s guidance and support, which is provided at no cost.
