Joel McClain Memorial Blood Drive

February 20, 2019

Give lifesaving blood donations during the Joel McClain Memorial Blood Drive, which will be held at Grace Presbyterian Church on Saturday, February 23 from 9 a.m. – 1:30 p.m.
The McClain family started the Joel McClain Memorial Blood Drive in 2012 after their son passed away at the age of 4 ½.
Joel McClain was born July 7, 2006 with Congenital Disorders of Glycosylation (CDG), a very rare genetic disorder that stressed his major organs and caused both physical and mental delays.
According to www.cdgcare.com, Glycosylation is the process of adding sugar building blocks (also called glycans) to proteins. Even though glycans are made of many sugars, this is not related to blood sugar levels or diabetes. People with CDG have health concerns because their bodies cannot properly add sugar building blocks to proteins. Every part of the body requires Glycosylation to work normally, which explains the many different health problems that affect people with CDG.
“I had heard of the disease before we found out Joel had it,” Joel’s mother Brea explained. “My nephew also has it, and it is extremely rare. It is a genetic disease. We already had four healthy kids before Joel, and (Joe’s dad) Kevin and I never thought it would be an issue with our children.”
Brea explained that her nephew is doing well.
“He is 15 now and doing really well,” she said.
She explained that they knew something wasn’t right pretty early on as Joel was smaller at birth than any of the other children and had really long fingers, toes and larger ears. He was also having a really difficult time gaining weight.
It was after they were referred to a geneticist when Joel was six-weeks-old that they learned Joel had the rare genetic disease.
Brea shared in an earlier interview that they had to change Joel’s diet because of this, and while he began gaining weight, there were other challenges Joel faced throughout his life, including an intense gag reflex and trouble chewing and swallowing food for almost a year, among others.
She said Joel had to consume high calorie meals because his metabolism was about three times as fast as the average person.
Brea noted that there are 14 sub-types of CDG and the one Joel had affected him both physically and mentally.
Despite the hardships Joel struggled through, Brea said it was hard to find him without a smile on his face, and he always wanted to be right in the middle of what his siblings were doing.
Joel even had the chance to meet his little brother. She explained that when Joel went into the hospital for the last time in January 2012, she had just given birth to their sixth child, Corwin.
“I spent four weeks sleeping in Joel’s hospital room and caring for my newborn. While it was obviously not ideal, I had friends who came and helped and the doctors and nurses were all very supporting,” she shared. “Joel was so excited to have a new baby brother, so he enjoyed some snuggle time with Corwin, too.”
Brea said Joel’s chances for survival were slim from the start, but he was blessed with good health until his fourth year of life when he got pneumonia and his liver began to fail.
“He was hospitalized for a month in July 2011 and for another month in January 2012. During these two hospitalizations, he received many blood products,” she said. “His liver eventually failed and he passed away on February 3, 2012. He was 4 ½ years old. He left behind four brothers and a sister.”
Brea explained that they started the Joel McClain Memorial Blood Drive because of all the blood products Joel received in the hospital and they wanted to give back to others in need.
“When Joel was ill, he needed blood products like fresh frozen plasma to help with clotting and albumin to increase his low levels. We saw other kids in the hospital who needed them, as well,” she said. “Hosting a blood drive that can yield 30 units of blood is a way to make a real difference in the lives of many people. We’ve collected over 200 units in the last seven years.”
For Brea and Kevin, she said seeing people come and support the American Red Cross and the Joel Memorial Blood Drive is amazing.
“It is amazing to see our friends and family, church members and neighbors come out to support the blood drive and keep his memory alive,” she said. “While donating money to the Red Cross is great, nothing can replace the lifesaving effect of blood donation. Many people who can donate never do. It really isn’t scary and doesn’t take much time either. One hour of your time is nothing when you think of the lives that can be saved.”
For more information about CDG, visit www.cdgcare.com/what-is-cdg. To learn more about Joel’s story, visit www.youtube.com/watch?v=x6t2HWoy6s4.
According to the American Red Cross, every unit of blood collected goes to a patient in need, and the need for blood is constant and only volunteer donors can fulfill that need for patients. Nationwide, someone needs a unit of blood every two to three seconds and most of us will need blood in our lifetime.
Grace Presbyterian Church is located at 360 Hopkins Road. For more information or to make an appointment (though it is not necessary), contact Red Cross Representative Millie at 336-447-8925.

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