Within 24 hours of Henley being born, Henley’s mom knew that something wasn’t right. She was having rapid respirations, wasn’t gaining weight, and looked very pale. At 6 weeks old, Henley was diagnosed with Shwachman-Diamond Syndrome, a rare disorder that results in bone marrow failure.
A bone marrow transplant could be Henley’s cure, but she needs a matching marrow donor first—and she needs it now. Her older twin sisters aren’t a match, but you could be.
To save baby Henley and patients like her, her family is asking that you join Be The Match Registry®. The more potential donors on the registry, the better Henley’s chances are for living a full and healthy life.
We'll ask you a series of questions about your medical history to see if you meet basic qualifications.
We'll need to get a sample of your DNA. Your kit should arrive in about 3-7 business days.
It's easy – just swab your cheek and mail the DNA sample back to us to complete your registration.
Because of the genetic complexity of matching donors to patients, it could be weeks, months or years before you're contacted to donate.
Be ready if you're contacted as a match. If called, you're a patient's best genetic match from the entire registry and perhaps their only hope for a cure.