Henry Gilchrist, a 12-year old seventh grader at Phillips Middle School, is a medical anomaly.
Despite two successful bone marrow donations from his brother Max to address Henry’s severe aplastic anemia — a disease in which the bone marrow doesn’t make enough blood cells for the body — is in need of a rare third bone marrow donation, which doctors hope will come from an unrelated match.
Friends of the Gilchrist family organized a bone marrow donation booth to sign people up to join the “Be The Match” registry to possibly find bone marrow matches for Henry and hundreds of others in need of a donation.
The “Be The Match” event was held during the Chapel Hill-Carrboro Public School Foundation’s annual 5k for Education at McCorkle Place on the University of North Carolina at Chapel Hill Saturday morning. The foundation works to support teachers and students with “enrichments and academic support, grants and scholarships,” said Lynn Lehmann, executive director of the foundation.
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“The Be The Match is most successful at events where there is an age group match so they approached us and we said ‘Absolutely we’ll open it up to participants,’” she said. “And we hope that other events will do the same. A 5K group is great because the age range they are looking for is 18 to 44 and seems to be the median age of runners, so any 5K in the future that wants to do this for Be The Match is great and we are glad we are able to kick it off.”
More than a dozen people signed up to become potential donors during the two-hour event, said Lori Black, a neighbor to the Gilchrist family and who volunteered at the event. Members of the Gilchrist family weren’t able to attend the event because Henry had recently been hospitalized due to his disease.
“He’s a very active guy,” she said. “He loves to be outside, play baseball and go fishing. ... He’s never gotten sad. He’s a hopeful kid with two older brothers so he’s got a great support system.”
Henry’s disease doesn’t necessarily make him “feel bad” but it prevents him from fighting common infections or other illnesses.
“He can be hospitalized just to fight a cold because his body can’t fight infections,” Black said, adding this has prompted him to sometimes be isolated from his friends and classmates.
She encouraged everyone between the ages of 18 to 44 to go through the process of trying to become a bone marrow donor. Most people are able to donate via having blood drawn while a smaller cohort have bone marrow taken from the hip. Still, she said, most people are “back in action” in less than 24 hours and it can help save a life.
More information about how to join the “Be The Match” registry, set up a donation event or receive a donation kit, visit join.BeTheMatch.org/Hope4Henry.
Update: Family finds 100 percent match
The Gilchrist family has announced it has found a match for Henry.
This is the update as posted to Facebook:
“There have been a lot of ups and downs since Henry was admitted to Duke in mid-March. Thus, his treatment plan has been influx as well. Recently, we found out that Henry has a perfect, 10-10, Matched Unrelated Donor, (MUD). After much discussion with Henry's team, we decided that it is best to go directly to the MUD for Henry's third transplant rather than receiving a boost from his brother, Max.
“The pre-transplant conditioning and transplant itself won't take place until early May. Since Henry's immune system is so fragile, he will have to remain in the hospital prior to the pre-transplant conditioning beginning.
“It's going to be a tough couple of months, but Henry is an incredibly strong teenager. He's feeling good right now. He's learning how to fly his drone, to program his Launchpad and doing his best to keep up with schoolwork. Thank goodness that Henry can keep in contact with his brothers and friends online.
“Our family is so very grateful for all of the love and support from our family and friends. Many people ask what they can do to help. Right now, we have everything pretty well covered. That may change in May when Henry's treatment plan is in full swing. We will keep you posted.
“For now, please consider donating blood or platelets at your nearest Red Cross. It is important that there is a reliable blood supply for all those in need. Also, consider joining Team Henry for the Rainbow Walk on May 6th:
“This is the primary fundraiser for the Duke Pediatric Bone Marrow Transplant Family Support Program. Details to follow.
“With much love and gratitude,”
Phil, Linda, Max, Grant and Henry