A University of Connecticut professor is currently searching for bone marrow transplant donors for her two sons, who both have a rare immunodeficiency disease.
Department Head of Kinesiology Dr. Lindsay DiStefano’s sons Luke, aged five, and Will, aged eight, who were diagnosed back in August 2017, are among the more than 12,000 people waiting for a bone marrow match.
The family is hoping that by partnering with Be The Match, a foundation that matches patients with donors, her sons will be able to receive a potentially life-saving cure.
When the DiStefano family began their challenging health journey, they formed the Be A Wonder Foundation. Dr. DiStefano is a clinical researcher, and she feels that because of her and her husband’s involvement in the health profession, they have been able to fight and advocate for their kids in ways that many families can’t.
Be A Wonder Foundation’s mission is to “support patients and families affected by rare diseases by providing resources to promote advocacy, research, education, and direct assistance for rare disease challenges,” according to the foundation website.
By partnering with Be The Match, the foundation will be able to connect directly with the bone marrow registry and continue its advocacy for those with rare diseases. UConn also has an important role to play, because “college aged people are the prime people to get on the registry because if you join at 18, you can be eligible to be a donor for 40 years,” said Dr. DiStefano.
Jon DeCasanova, coordinator for Be The Match, said that UConn is one of Be The Match’s biggest yearly campus drives. They attend HuskyTHON and there is a Be The Match club that meets on campus.
“At least once a year someone from UConn or someone that registered at UConn actually becomes a best match and donates, which is pretty special,” said DeCasanova.
The process to donate is simple. If you are between the ages of 18 and 60 (the younger you are the higher the success rate), you can register online and request a cheek swab kit to be mailed, or attend a Be The Match event where the kit will be available.
“Even if you are that match, and you get that chance to save a life-which is such a special thing- 80% of the time it is done through the blood. Just like a platelet or plasma donation,” DeCasanova said.
With 1 in 430 people actually being able to donate, finding a match is a rarity. But, it is important to have as many people in the registry as possible to boost matches. Currently, there are over 22 million people in the registry.
The sons of Dr. DiStefano represent a small part of the more than 12,000 people waiting for a match. Luke DiStefano, despite having spent the majority of his life in the hospital, takes his disease in stride.
“He’s had more blood draws and IVs than most people have in their entire lives, and he’s not phased by it,” said Dr. DiStefano.
Just in the last week or so, the Be The Match foundation has had over 150 people register with their link or by texting BeAWonder to 61474.
For more information on the DiStefano family’s journey and rare disease advocacy, check out beawonder.org.
For more information on how Be The Match helps patients, the donation/transplant process and how to support the cause, check out the bethematch.org.
Thumbnail courtesy of @BeTheMatch on Twitter.