LI family in need of bone marrow transplant match for 2 young girls on mission to raise awareness
Watch Eyewitness News This Morning and Good Morning America on Tuesday to learn more about Robin Roberts' story
LAKE GROVE, Suffolk County (WABC) -- As members of the ABC family, we are celebrating the 10th anniversary of our friend Robin Roberts returning to GMA after getting a bone marrow transplant.
It saved her life. And it can save the lives of others-- if they find a match.
Learn more about how to become a donor through the Be The Match registry.
A family on Long Island with two young children facing a rare disease that could require a bone marrow transplant in the future is using their story to raise awareness about the importance of joining the registry.
A visit with the Superina family here in Lake Grove can't help but melt your heart.
Four of the sweetest young daughters, each, with their own personality that would make any parent want to freeze these moments in time.
"They have so much energy, so much life," Mom Lisa Superina said. "And we just want them to stay that way forever."
But for Lisa and Graig's two youngest daughters, Kayla and Nora that is especially true.
"I know I take more pictures than I do of my other girl," Lisa said. "I just do it because there's always that fear, of what could happen."
Two-year-old Nora and 4-year-old Kayla both have a rare, inherited disorder called Shwachman-Diamond Syndrome or SDS.
It can cause bone marrow failure and puts them at higher risk for blood cancers.
"I think the risk of leukemia...I mean, we think about that and we live with that every day," Lisa said.
Their two older sisters, Emma and Maria, are carriers of the disorder, like their parents and no one in their family is a match, should the girls need a bone marrow transplant down the road
Lisa is constantly checking the registry.
About 70% of patients who need a transplant, don't have a donor from their family who fully matches making the bone marrow transplant registry that much more important for patients searching for a donor.
"They currently have zero matches in the registry,' Lisa said.
Depending on a person's ethnic background, the likelihood of finding a match can be even harder.
"It's scary because we just don't know if and when they'll ever need something," Graig said. "And if anyone would be available to donate."
The Superinas's journey is like so many others highlighting the importance of bone marrow donation.
Interestingly they never even knew Kayla had SDS until after her younger sister was born. Kayla had been asymptomatic up to that point but not little Nora.
"She had elevated liver enzymes," Lisa said. "She was a failure to thrive."
Her mother pushed fiercely for genetic testing and the family is so grateful she did.
"It was a blessing for our other daughter that we would have never known until maybe it was too late," Graig said.
Right now the family is thriving and raising awareness about the importance of registering as a donor.
Lisa and Graig are confident that they'll learn to face whatever challenges lie ahead.
'It's hard you just want your kids to be happy," Lisa said. "And you want them to have a normal, healthy life."
Robin Roberts has made it her mission to raise awareness about the Be The Match bone marrow registry after she received a life-saving transplant in 2012.
Now you could be the match for a patient in need of a donor.
Watch the ""One Match, Second Chance" special on Eyewitness News This Morning and Good Morning America Tuesday , February 21 to learn more about Robin's story and meet some of the people getting swabbed to help those in need of a match.
Learn more about how to become a donor through the Be The Match registry.
