July 1, 2023 — July is a month dedicated to summer fun, lots of family time and exploding firework displays. July is also recognized as National Cord Blood Awareness Month. To date, more than 100,000 patients have received cord blood transplants since the first one was performed in 1987. This July, a Florida family will be celebrating their son’s seven-year ‘engraftment’ anniversary and remembering when they heard the news that his cord blood transplant had been successful … with fireworks exploding in the background.
Felicia Morton and Miguel Sancho were thrilled to learn in 2007 they were pregnant with their first child. After a smooth pregnancy, Felicia gave birth to Lydia in July 2008 — so close to the 4th that Miguel and Felicia called her the “first firecracker.” Aside from sporadic and treatable asthma, her health was stellar and according to Miguel, they simply could not get enough of their first born. So, it made sense they would want to bring another beautiful child into their family. In 2011, they were equally as thrilled to hear Felicia was pregnant and this time it would be a little boy entering their world … a world that seemed nearly perfect for this soon-to-be family of four. Sebastian Kai Sancho was born the first of May 2012 in a New York City hospital. Felicia and Miguel could not wait to be released from the hospital so they could return home and introduce Lydia to her baby brother. At the time, Miguel was working as a television news producer and Felicia owned a successful public relations agency in New York City. Life was undeniably good.
Within two months, however, the situation changed dramatically. Sebastian spiked a very high fever. They gave the tiny baby acetaminophen and cool baths, as directed by their pediatrician, that would reduce the fever but then it would climb again. After a few days, Sebastian’s doctor ordered blood work that came back with a very high white blood cell count signaling some type of infection. They were advised to take the infant to a nearby emergency room so IV antibiotics could be quickly administered to start fighting whatever was causing his high fever. That hospitalization lasted a few days. Then a few weeks later, Sebastian developed a skin abscess that needed to be surgically removed. Unfortunately, once it was removed another abscess grew. And then, yet another.
More doctors and more tests led to more questions. Felicia and Miguel were beyond exhausted and frustrated with the ‘unknowns’ surrounding Sebastian’s medical issues. Sensing he might have an issue with his immune system, Felicia took five-month-old Sebastian to a pediatric immunologist — the 19th specialist to examine and treat the baby — who put all of the pieces of this complex medical puzzle together. In October 2012, Sebastian was diagnosed with an immune deficiency called Chronic Granulomatous Disease (CGD). CGD is very rare; it occurs in only one out of every 250,000 births. It is a serious genetic disorder that left Sebastian’s immune system unable to fight infection.
“The news was devastating,” Felicia said. “This was not a condition that could be treated and go away, or one that would require moderate adjustments. It was a life-threatening genetic immune deficiency.” The pediatric immunologist told Felicia and Miguel there was only one curative treatment — a bone marrow transplant. The doctor explained this would be a lengthy procedure involving intense chemotherapy to shut down Sebastian’s immune system, the introduction of cells from a matched donor, and an extended (and painful) recovery process that many times resulted in serious setbacks.
Although there were some dark days after hearing this news, there were also moments of sunshine for this family. 2013 was slightly less challenging because Sebastian’s health stabilized once doctors prescribed standard CGD prophylaxis, which involved a combination of daily antibiotic and anti-fungal medication. Sebastian started walking early and soon after started pedaling a scooter around their neighborhood. As Miguel remembers, “People who met him could not believe he had a deadly illness, which also made it hard to imagine that we would put such a happy, thriving child through a bone marrow transplant.”
Since hearing the diagnosis, Felicia had been researching various Internet sites and calling patient groups throughout the nation. One of those was the Immune Deficiency Foundation, which connected her to other CGD moms. Felicia learned that some patients can manage their disease well, thanks to medication, vigilant medical care, and environmental restrictions. But the risk of lethal infection would always be high. As a result, many patients start having complications in their 20s and many do not live past 40 years old. In the end, due to Sebastian’s diagnosis of the most severe type of CGD, Felicia and Miguel agreed to pursue the only known cure for the disease. Thus began their search for Sebastian’s bone marrow donor.
The best-case scenario for a bone marrow donor is a sibling. Due to shared genes, a fully matched sibling typically guarantees a smoother transplant. They had big sister Lydia tested via a cheek tissue scrape, but learned she was not a match. Felicia and Miguel then turned their efforts to finding a matched, unrelated donor. For this, the family was directed to the National Marrow Donor Program and its Be the Match Registry, which is a database of more than 15 million prospective donors who volunteer their sample cells. The National Institutes of Health typed Sebastian’s blood and initiated the search. Five potential donors were found in the database, but they faced yet another hurdle with Sebastian. Miguel has Latino roots while Felicia’s roots are European. It is harder to find a matched unrelated donor for children of mixed ethnicity parents. Eventually they learned that none of the five potential matched donors from the database were viable for Sebastian.
This unexpected turn in Sebastian’s transplant journey took the family to Duke University Hospital in Durham, North Carolina, nearly 500 miles from their New York home. Duke’s Pediatric Blood and Marrow Transplantation Program had saved thousands of lives. Felicia and Miguel hoped that would be the case for Sebastian. Duke was a pioneer in umbilical cord blood transplants from unrelated donors, which is what would likely save Sebastian’s life with no viable bone marrow donors in the system.
Felicia remembers, “In March 2016, we were scheduled to have a routine consultation at Duke to determine if we were going to move forward with an unrelated umbilical cord transplant during the summer months. Sebastian had been battling a cough and fever. His symptoms left our New York doctors scratching their heads because he did not ‘present as severely sick.’ The team at Duke had experience with CGD and immediately scheduled a CT scan of Sebastian’s lungs. They found 12 infected granulomas on his lungs that had eluded others. To our surprise, we were immediately admitted to the transplant unit at Duke. What was supposed to be a two-day consultation turned out to be a nine-month stay in North Carolina for our family.”
It was also in March 2016 when a transplant social worker at Duke suggested Felicia and Miguel reach out to the Children’s Organ Transplant Association (COTA) to see how the organization might be able to help, since it appeared the family would be hundreds of miles from their homes, and their jobs, for several months and possibly longer.
The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
On March 22, 2016, COTA received the necessary paperwork; Sebastian’s family officially became part of the COTA Family and Sebastian became a COTA Kid. On May 1st a COTA representative trained the family’s team of volunteers in New York City while the family remained in Durham, North Carolina. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. COTA in honor of Sebastian S was launched, and the website was immediately available for online donations for transplant-related expenses.
In a relatively short amount of time, friends and family members utilized COTA’s fundraising resources and raised nearly $45,000. Felicia credits much of their team’s fundraising success to COTA’s nonprofit charity status, which allowed friends and family to make tax-deductible contributions to the COTA for Sebastian S campaign.
Over the next three months, Sebastian’s serious lung infection resolved. And on June 6, 2016, four-year-old Sebastian received his life-saving transplant from an unrelated umbilical cord blood donor. The post-transplant days were difficult, but Sebastian fully engrafted on July 4, 2016, with fireworks lighting the skies outside of his Duke transplant center room. Felicia and Miguel both felt a sense of ‘guarded’ relief; perhaps they too would be able to declare independence from CGD.
COTA’s President was visiting Duke to meet with a group of transplant professionals during Sebastian’s inpatient transplant stay. When he learned there was a COTA Kid currently receiving care at Duke, he reached out to Felicia and Miguel to see if he could briefly visit with them.
Felicia said, “The moment I met Rick Lofgren at Duke University Hospital, I felt hope. His kind smile and genuine care for our family eased my concerns and helped me breathe easier. There is so much to consider with a transplant journey including all of the financial stressors. Even with good health insurance, many medical procedures are not covered. I had stepped back from my successful PR agency and while my husband was able to continue working, the loss of my income was stressful. Knowing that Rick, COTA and our loving network of friends and family were all behind our family meant the world to us.”
“Whether COTA funds were used for major medical expenses or travel back and forth from New York to North Carolina or a myriad of transplant-related expenses, we felt so much love and support throughout the process by having this financial and emotional support,” she said.
By late July, Sebastian’s recovery had progressed to the point where he could be discharged from the transplant unit (with a huge hallway confetti parade) to live with his family in a transplant apartment near the Duke campus. Sebastian had to return to the transplant clinic each day for ongoing medication, testing and monitoring. Slowly Sebastian improved, which meant his medications could be tapered off. The best gift of all? The family was cleared to move home to New York just in time for Christmas 2016. Once back in New York, they still needed to live in relative isolation except for visits to Memorial Sloan Kettering Cancer Center for follow-up testing. In September 2017, Sebastian was cleared to start Kindergarten … right on time.
Miguel says the primary pillar of the family’s faith during those first weeks back home in New York was gratitude. He took on the task of writing thank you notes to everyone who had contributed to COTA in honor of Sebastian. This arduous process took days, but it was part of Miguel’s recovery and healing from the transplant journey they had traveled to North Carolina and back. The handwritten notes were accompanied by a ‘happy’ Sebastian photo and contained this (slightly edited) message:
This moment of health and happiness was made possible by YOU … everyone who helped, prayed, donated, fundraised, accommodated, sympathized, cooked, babysat, listened, wrote, visited, forgave or did any of the other countless things that have made Sebastian’s survival a reality. You can assure yourself you have helped save the life of a child who very much wanted and deserved to live. Cheers!
“COTA has been with us from start to finish. Like a good friend or family member, we knew we could count on this organization to help us through the most stressful period in our lives. We always felt the entire COTA team was cheering us on and caring for us every step of the way. No parent or patient should have to worry about finances during a transplant journey. COTA funds proved to be a lifeline for us during a stress-filled time when we needed help with transplant-related expenses,” said Felicia and Miguel.
Sebastian’s transplant also opened the door for a major career change for Felicia who is now the Founder and Executive Director of the CGD Association of America, which is a patient advocacy and education group. Felicia has become one of the nation’s leading advocates and spokesperson for individuals with Sebastian’s diagnosis and their families. Her life’s work is now laser focused on ensuring those diagnosed with CGD do not give up hope of a CGD-free life, like the one Sebastian is now living.
This July, Sebastian will be enjoying summertime fun while preparing to start 6th grade in the fall. He is a healthy 11-year-old with a big heart who is curious, inventive and always ready to hop on a train and take off on his next adventure. Indeed, Sebastian loves building train systems with the many model trains he has collected over the years. So, naturally, when he grows up, he wants to be a train engineer. Sebastian said, “This will also be better for the environment because trains are a more fuel-efficient way to transplant people than cars.” Just as Sebastian sailed through his life-saving transplant, he is sailing through life … living each day to its fullest and seeking new places to explore.
Cord Blood Awareness Month (July) serves the purpose of educating people and raising awareness regarding the importance of cord blood, which is the blood and tissue derived from the placenta and a baby’s umbilical cord. Over time, doctors have realized how essential this blood is. Cord blood is used worldwide to cure numerous diseases. Cord blood has surpassed bone marrow as a source for stem cells in transplants. Cord blood transplants can help treat more than 80 blood cancers, genetic diseases and immune system and metabolic disorders, including leukemia, lymphoma, and sickle cell disease.
