Two Journeys for One Family
Lucy and Landon get the bone marrow transplants they need in the fight against Severe Combined Immunodeficiency
Everyone who stays at The Children’s Inn at NIH is making their way through a unique medical journey. Even within the same family, dealing with siblings who share a diagnosis, the journeys can take wildly divergent paths.
Take, for example, Lucy and Landon, siblings who arrived at The Inn in early March 2024. For seven-year-old Lucy, that arrival culminated in two years of searching for answers. For 12-year-old Landon, it opened up a path he hadn’t even realized he was traveling. Now, several months later, both are well on their way to recovery and a resumption of their active childhoods in North Carolina.
Lucy is a friendly and articulate girl who loves school, especially since it means seeing her friends. In 2022, when she was only five, Lucy began developing spots all over her legs. They looked like mosquito bites, and her parents, Mary and Darrell, thought for a while that was all they were. But the spots persisted, and later that year, she had a huge spot on her hand that showed no signs of improving.
“We took her to [Brenner Children’s Hospital] in Winston-Salem,” Mary remembered. “They did some tests and couldn’t figure out what was going on, and nothing was getting better.”
Lucy was in and out of doctors’ offices and hospitals for the next year and a half. In October 2023, she had to be airlifted to Brenner with a bad case of double pneumonia. She was in the step-down ICU for a week before she was cleared to come home from that visit.
Shortly after that, one of the spots on her leg burst open, leaving it oozing and infected. It remained bad in February 2024 when, on what her family thought was a routine trip to Brenner for bloodwork, she was admitted and remained there for nearly a month.
During that extended stay, a rheumatologist was able to run a gene panel that flagged her with a rare genetic disorder known as Severe Combined Immunodeficiency (SCID). Lucy had a form of the disorder that allows patients to survive beyond infancy and sometimes into adulthood, but still carries with it the risk of severe infections and abnormal immune system activation. Immediately, wheels were set in motion, leading to a comprehensive immunology evaluation by experts in her rare disease at the National Institutes of Health.
“We pretty much checked out of one hospital and checked in here,” laughed Darrell. The family had two days at home after the last trip to Brenner before they checked into The Children’s Inn at NIH.
At first, the focus was entirely on Lucy. But it did not take long for the National Institute of Allergy and Infectious Diseases doctors examining her to ask Mary and Darrell to bring the rest of their four children in for testing, too. Lucy’s twin sister Lani and her older brothers Landon (12) and Levi (15) all made the trip to Bethesda, where they underwent testing for the genetic changes found in Lucy. It revealed that only Landon – to that point, a seemingly-healthy sixth-grader with a love of dirt bikes and remote control cars – shared his sister’s diagnosis.
“At first, I was a little bit mad,” Landon remembered. “But at least I knew that I can get it over with. It was good that they found out now instead of when it got worse.”
The good news was that even for Lucy, who had been dealing with ailments related to her condition for two years, the SCID had been detected relatively early. After a successful bone marrow transplant with a working immune system from another person, the problem should be behind them. More good news came when Levi was determined to be a match for Lucy, and a first cousin was able to serve as a donor for Landon.
“My understanding of [SCID] is that they can’t fight infections the way we fight infections,” Mary explained. “Over time, it gets worse and attacks the organs from the inside out.” She recalled meeting a man who had been diagnosed with the same disorder at age 35 after a lifetime of perplexing illness. He had lost all his hair and nail follicles, suffered vocal cord damage, and had lung damage and heart issues as a result of his condition. He underwent the necessary bone marrow transplant at age 40 on the same protocol and with the same team of bone marrow transplant doctors at the National Cancer Institute but was in a coma and had a rough recovery. “Sometimes this goes untreated and the outcome is not the best,” she said. “Their bodies are fighting what they can, but all it takes is one infection to blow the whole immune system up. We are very lucky that Lucy and Landon never got a major infection that could have been devastating.”
Lucy, whose condition left her in more urgent need of a transplant, underwent her procedure on April 5. Landon’s followed on June 17. Though Lucy experienced some issues with her new immune system being overactive, which led to pneumonia, doctors were able to ease her from a twice-a-day antibiotic schedule to twice-a-week visits to the NIH Clinical Center for blood draws. Landon has experienced a smooth recovery so far.
As they recovered, Lucy and Landon began to explore the opportunities available to them at The Inn. Lucy adored the programming team and especially enjoyed the arts and crafts activities they regularly performed. She also became very fond of Zilly, The Inn’s therapy dog. Missing the wide open spaces around home, Landon made the best of his surroundings by using The Inn’s bikes to speed around the playground and parking lot. Both of them also spend a lot of time in the game room, where they play pool. After their procedures, they both got RC cars, which could be seen zipping around the indoor and outdoor spaces at The Inn.
“It’s wonderful just having all the amenities here, especially with the programming team and the activities they’re providing,” smiled Mary. “Not many places provide bikes and things like that. It gives them something to do and get their mind off things around them. It’s good to blow off steam, laugh, cut up and carry on.”
Doctors are pleased with the early results of their transplants. Both siblings will make annual visits – Landon looks forward to being able to drive himself in a few years – but are expected to make a full recovery.
Though Lucy and Landon came from the same house and got the transplants they needed at the same time, their paths to get to that point were very different. Now, though, they look forward to forging their own paths to healthy lives knowing that The Inn will be there for them as they make their way forward.
Landon and Lucy with their uncle and aunt at The Inn
