Lily’s story – Raising awareness about both leukemia and Down Syndrome

Posted October 18th, 2017 by Be The Match and filed in Patient Stories
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When three-year-old Lily LaMartina started limping last summer, her parents thought it might be due to the effects of Down syndrome, which Lily has. But when she stopped walking altogether, they knew something else was going on.

3-year-old Lily

Initially, her doctors thought she had a fracture, and then a possible bone infection. But more testing revealed that she had acute lymphoblastic leukemia (ALL). The disease causes a person’s bone marrow to make too many B-cell lymphoblasts, or immature white blood cells.

As Lily’s parents learned more about their daughter’s leukemia, they also discovered that people with Down syndrome are 20 times more likely to develop ALL.

Thankfully, Lily went into remission after getting chemotherapy, but she is still receiving treatments to hopefully prevent her leukemia from returning.

Lily’s first day of school

Her parents know that there is a good chance her treatments will keep Lily in remission for a long time. But if Lily does relapse, she would need a blood or marrow transplant (BMT).

With this possibility, her parents are committed to helping raise awareness about the importance of joining the Be The Match Registry®.

“When we were in the hospital, we met families with kids who had relapsed from cancer,” says Jay, Lily’s father. “We were all fighting the same battles. It was sad but, comforting knowing we were not alone.”

And while they are raising awareness about Be The Match through word of mouth and a very active Facebook presence, they are also spreading the word that having Down syndrome is a risk factor for developing ALL.

If you would like to join the registry on Lily’s behalf, please click here.

Learn more about ALL and BMT.

A Father’s Urgent Plea

Posted June 14th, 2017 by Be The Match and filed in News
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Kapil, searching patient

Kapil will be spend this Father’s Day with his three children. Nothing out of the ordinary has been planned, but for Kapil, it will be very special.

Earlier this year, Kapil was diagnosed with myelofibrosis, a disease that causes debilitating symptoms such as fatigue, abdominal discomfort, that affect the quality of his daily life. Doctors has given him 2 to 3 years to live. His only hope for a cure is a marrow transplant. Like 70% of patients, Kapil does not have a fully matched donor in his family and has turned to Be The Match® to find an unrelated donor.

“The best part about being a dad is seeing my kids happy. Seeing them blooming on their own, crossing milestones like going from speaking five works to a sentence,” said Kapil. Like all parents, he wants his kids to study hard and be good, contributing members of society. “I hope I am able to be there for that, but the reality is, there’s a chance I am may not be,” he said.

Kapil says he is truly touched by the outpouring support he’s received from the community. Friends, family and strangers have hosted marrow drives and/or joined the registry.

“I want to send a message to all those who are out there. That you have a chance to save somebody’s life. It may be mine, it may be a 3-year-old, a 9-year-old, a 21-year-old, it doesn’t matter. The point is, just be ready that if you are a match to please come forward and take the steps involved to donate stem cells. Cause for you it might be a blood draw, but for me (and others) its life-saving,” Kapil pleads.

This Father’s Day, be the hope Kapil and patients like him are looking for. Join the marrow registry at join.bethematch.org/HOPE4KAPIL.