By Hannah Curran, Editor
TRUSSVILLE — “Meads Miracles” plans to host a fundraiser to raise awareness for Congenital Disorders of Glycosylation (CDG) on Monday, May 16.
CDG Awareness Day is May 16, and Hannah and Jared Meads have discussed hosting an annual fundraising event.
To kick off the day, a golf tournament will be held at Grayson Valley Country Club at 11 a.m. Following the tournament, awards will be given out at 4 p.m. at Ferus Artisan Ales in Trussville. Ferus will donate 10 percent of all food and merchandise sold at Ferus will go to The Bell Center, an Early Childhood Development Center in Birmingham. The Meads asks that all attendees wear green to support CDG Awareness Day.
“We’ll have different things, we’re going to have a band from 6 p.m. to 9 p.m. playing at Ferus, and we plan to have a raffle, selling T-shirts, stuff like that there,” Hannah said.
Hannah explained that you do not have to attend the golf tournament to attend the second event at Ferus.
The money raised at the events will be donated to the Bell Center to help fund equipment that they use for therapies for kids with these diagnoses and disabilities. The donation will also help pay for scholarships for families that can’t pay the full tuition or can’t pay the tuition at all.
“They don’t like to turn families away, so they have a scholarship system,” Hannah said. “So this money can help go to pay for some scholarships for families who can’t afford to be at the Bell Center just on their own.”
Related Story: Meads Miracle: Family’s twin boys ‘came into this world together and then went out together’
The Meads twins, Tucker and Bennett, were born with a rare genetic disorder, CDG.
Bennett and Tucker Meads (Photo courtesy of Hannah Meads)
CDG is a large group of rare genetic disorders that affect adding sugar building blocks, called glycans, to proteins in cells throughout the body.
The addition of glycans to proteins is critical to the healthy function of cells. Bennett and Tucker were diagnosed with the most common type of CDG, type 1a or PMM2, with only around 900 documented cases worldwide, and very few of those cases are diagnosed in a set of twins.
Tucker and Bennett passed away in August 2021, shortly after their first birthday.
“We just want to do anything that we can to honor the boys and to help organizations that meant something to us during our journey,” Hannah said. “So the boys were a part of the Bell Center for a short time, and they were helpful to us and impacted us, so we just want to give back to them. We are doing that, honoring our boys, and trying to give awareness about CDG, and giving back to an organization that meant a lot to us.”
The Meads boys impacted many people in their short time. The doctors and nurses who cared for them saw the light that Tucker and Bennett were shining. They were the happiest babies. Hannah explained that in a place where God is not typically seen, the boys were miracles through it all.
Be sure to sign-up ahead of time to participate in the golf tournament.
