KERNERSVILLE, N.C. – What happened in the early hours of Friday, February 3, 2012, is something many parents would not want to remember. Joel Whitmire McClain, who suffered Congenital Disorder of Glycosylation (CDG), lost his battle to pneumonia. But nearly six years later, his mother and father, Kevin and Brea McClain, do just that.

Since 2013, the McClain’s host the Joel McClain Memorial Blood Drive at Grace Presbyterian Church in February, which not only coincides with the month that Joel died, but also Rare Disease Awareness month.

Joel’s disease affected his body’s ability to process sugar, therefore causing malnourishment which led to a very fragile immune system.

The disease is so rare that when they diagnosed Joel with CDG, there were less than 1000 known to have it.

It caused Joel to constantly become ill which required constant medical attention and procedure. The most frequent were blood transfusions.

When asked how many transfusions Joel had had, McClain responded, “We’ve lost count, it was many times, it really was.”

The many transfusions afforded the McClain’s more time with their fifth son, Joel. But the beginning of 2012, time started to run out.

“He got pneumonia,” McClain said. “Especially with someone’s who’s immune compromised and things like that, it doesn’t have a lot of resources to fight it.”

His liver began to fail and the doctors started to prepare the family for what was to come.

“I remember the doctor telling us ‘You should bring your kids to the hospital so they can see him one last time because it won’t be long now,’” McClain shared emotionally.

But the family wanted to turn the grief of Joel’s death into something positive.

“My wife decided ‘How can we give back?’ and one of the things we could connect the dots was that we were the recipients of blood products that allowed us to have more time with him,” McClain said.

He adds that hosting the blood drive in Joel’s memory is a way to give back, because “we received that gift from other people and we would like other people receive that gift.”