Falls Church family searching for donors after siblings diagnosed with rare medical disorders
Falls Church family seeking help for siblings diagnosed with rare disease
A Falls Church family just received two incredibly rare medical diagnoses, and are asking people across the DMV to step forward and help save their lives.
FALLS CHURCH, Va. - A Falls Church family just received two incredibly rare medical diagnoses, and are asking people across the DMV to step forward and help save their lives.
The backstory:
Lucca Thompson, 2, and Noelle Thompson, 4, were both diagnosed in early May with Chediak-Higashi Syndrome. It’s an exceptionally rare genetic disorder that can be fatal if it’s not properly treated. It’s so rare the NIH says there are fewer than 500 documented cases worldwide.
"I wake up every day and I'm like, how is this our life?" their mom, Kiya Thompson said. "How did we end up here? How is it that both our children are suffering with this?"
Dig deeper:
The Thompsons were recently informed their children now need urgent, life-saving blood stem cell transplants.
Lucca looks to have some matches in the worldwide NMDP registry, but doctors recently told the Thompsons of the 41,000,000 registered donors, there’s not a single match for Noelle.
"I had no idea of my capacity for love until I had my kids," their father Justin said. "And the knowledge that I could lose one of them or both of them is absolutely devastating."
Kiya and Justin told FOX 5 they suffered three miscarriages, and that their two children were their miracle babies.
"We felt like for the first time we felt like our family was complete," Kiya cried. "It was our moment of happiness and now it's just uncertainty and fear."
What you can do:
The Thompsons are now urgently asking people across the DMV to register as possible donors and find their daughter a life-saving match.
"We will keep trying as long as we need to," Justin said.
Registering with NMDP is a simple process; all you have to do is a cheek swab. Medical experts also say donation is far less involved than people expect. You can learn more and join the registry with NMDP here.