Kayla (left) and Nora are still searching for a donor match.
“I try to find happiness in every small moment … but I need more. I need these special little moments to continue forever.”
These are the words of Lisa, the mother of little Nora and Kayla. Each day she tries so hard to give her girls a normal, happy childhood—but there is always a dark cloud hovering overhead.
Sisters with a rare bond
Kayla has always appeared healthy, but when her younger sister Nora was born, Lisa knew something wasn’t right and sought numerous specialists. At just 15 months old, Nora was diagnosed with Shwachman-Diamond Syndrome (SDS). This rare, genetically inherited syndrome is characterized by bone marrow failure, too few white blood cells, and poor growth due to difficulty absorbing food.
After this diagnosis, Lisa made sure to get her three other daughters genetically tested, and the family discovered that Nora is not alone: Her older sister Kayla also has SDS.
Searching for a match
People with SDS—like Nora and Kayla—are more likely to develop blood cancer or other blood disorders in their lifetime. And without a blood stem cell transplant from a matching donor, their fragile bone marrow may be too weak to help them fight and survive.
That fear of cancer or another blood disorder puts a heavy weight on Lisa’s shoulders. She’s been desperately searching for a matching blood stem cell donor.
Unfortunately, no perfect match has been found in their immediate family or on the Be The Match Registry®. The girls share the same genetic type, though, which means one selfless donor has the potential to save both girls’ lives.
We know Nora and Kayla’s match is out there somewhere. We’ve seen other patients finally find their donor hero, thanks to our generous community of supporters whose gifts have helped more people join the registry and create more matches. Last year alone we impacted more than 7,000 lives through transplants—and it all starts with connecting patients in need with a matching, available donor who can give them hope.
Lisa joined the registry to give hope to other searching families like hers.
Igniting hope, together
Growing the registry ignites hope—and that hope can set off an amazing chain reaction of matches, transplants and second chances.
You can ignite hope for patients, too—starting today. With your support, we can add more potential blood stem cell donors to the registry. Every new member on the registry is there because someone, somewhere, made a financial gift to help cover the costs required to add them.
Financial gifts are also used to fund groundbreaking research and provide patient assistance grants to help more people burdened by the uninsured costs related to transplant.
You can even double your impact on patients like Nora and Kayla, simply by giving today. All gifts will be matched dollar for dollar through the end of September—thanks to the incredible generosity of National Marrow Donor Program® (NMDP)/Be The Match® board members Anne McGeorge and Dr. Elizabeth Shpall. They have pledged to match all gifts up to $100,000 through September.