West Falls Church siblings Noelle and Lucca Thompson have more in common than just their last name and love for music.
Both children – 4-year-old Noelle and 1-year-old Lucca – inherited an extremely rare, immune-related condition called Chediak-Higashi Syndrome, or CHS, a disorder that puts them at high risk for infections.
Noelle loves painting, drawing and ballet, while her little brother is an energetic explorer who enjoys going on walks, playing with bubbles and tossing balls around the house.
The children’s mother, Kiya Thompson, told InsideNoVa Noelle began showing symptoms of Chediak-Higashi Syndrome at 9 months old, after she began developing mouth ulcers and was bruising easily.
Meanwhile, Kiya Thompson said, Lucca was hospitalized with an infection that he couldn’t kick. After getting increasingly ill, both children were diagnosed with CHS in May 2025.
The siblings have been receiving treatment at Children’s National Hospital, but they’re now seeking a blood stem cell transplant. If left untreated, their health could worsen, developing into a potentially life-threatening inflammatory condition.
Thompson said as adventurous and playful as her children are, they’re unable to enjoy a normal childhood.
Things like visiting museums and going camping are difficult for the Thompson family with the life-threatening diagnosis that could make contracting a common illness deadly.
“We’re kind of at the mercy of how they’re feeling. So, if there’s any activity that they could potentially be exposed to illness … we have to keep them home,” she said. “They’re actually pretty energetic for being as sick as they are, which sometimes is frustrating for a mother, but also I’m just so thankful to have kids who have enough energy to play right now.”
Though Lucca has found potential matches, doctors and the family are still searching for a match for Noelle through NMDP – the world’s most diverse donor registry formerly known as the National Marrow Donor Program and Be The Match – to proceed with the blood stem cell transplant.
The Thompson family is asking the regional community to join the NMDP Registry in hopes they can find donors for their children.
“I care the most about my children, and I want them to have the best outcomes and the most carefree life and extended life as possible,” Kiya said. “But they’re not the only ones who are waiting for a donation. There are a lot of people who are in need, and so it’s bigger than just my family.”
The process for joining the registry involves swabbing your cheek and mailing in your test kit for type matching. Those deemed to be a match for anyone in the NMDP system would then be contacted. The process for donation could involve either a non-surgical procedure – similar to a blood transfusion – or it could require a surgical procedure where the donor is placed under anesthesia and liquid bone marrow is extracted from behind the hip bone.
“There’s always some minor risk, but it is considered safe to donate, and so people need to understand that the chance to save a child’s life from a potentially fatal disease – what we’re requesting from from you as a donor – is truly insignificant in the big scheme of things,” Erica Sevilla, a representative from NMDP, told InsideNoVa. “The chance to save a life isn’t something you can often do, and so we really encourage people to answer the call to speak to NMDP, and to be open to saying ‘yes.’”
Anyone interested in learning more can visit go.nmdp.org/thompsons.
This article was written by FFXnow’s news partner InsideNoVa.com and republished with permission. Some minor edits were made updating the status of the Thompson family’s search. Sign up for InsideNoVa.com’s free email subscription today.
