Meadville Lions Club raising funds for treatment of kid with rare genetic disorder

May 21—The Meadville Lions Club is set to hold another of its popular Zoom Bingo fundraisers this Thursday at 7 p.m., though this time, rather than as a club fundraiser, it's to raise money for the son of a Crawford County woman in need of lifesaving medical treatment.

The latest iteration of the fundraiser will collect money for the transportation of Lex Munneke, the son of Jacob Munneke and former Cambridge Springs resident Jennifer Corbett. Lex is suffering from a rare genetic disorder called spinal muscular atrophy with respiratory distress, otherwise known as SMARD1. The disease affects the motor neurons that travel down the spinal cord and control muscle movement.

"It's a super-duper rare condition, and I think there are probably less than 100 cases ever known," said Corbett, who is herself a cognitive neuroscientist, as is her husband.

As a result of the condition, Lex has lost control of his fine motor control and much of his movement. While his parents say he has limited movement in some areas, such as his shoulders, he cannot move his toes or fingers and requires a ventilator to breathe.

The condition was first detected when Lex was only 14 months old when he suddenly stopped breathing. For small children with SMARD1, the condition first affects the diaphragm, and the onset of the condition caused him to suffer four heart attacks and a stroke.

Fortunately, treatment for the condition is possible. Corbett explained that SMARD1 only affects one specific gene in the body, allowing for it to be relatively easily combated compared to more widespread genetic disorders.

Unfortunately, the rarity of the disease means treatment facilities are also relatively hard to find. The family currently lives in London, but the only source of treatment is at Nationwide Children's Hospital in Columbus, Ohio.

While Corbett and Jacob have prepared for a move — including securing jobs at Ohio State University — there is an issue of transportation. Flying Lex across the Atlantic will require a plane filled with expert medical staff, such as a trained doctor, nurse and anesthesiologist, essentially creating a mobile hospital room.

In order to make this possible, the family needs to raise $270,000 and do so quickly. SMARD1 is a rapidly degenerative disease, and will lead to Lex's death if he is not treated.

That is where the Lions Club are aiming to help. Mary Lynne Peters, a member of the club, is good friends with Corbett's mother, Sandi. When Peters heard about the family's situation, she convinced her fellow Lions to put on the fundraiser.

Zoom Bingo was started by the Lions Club as a way to fundraise during the COVID-19 pandemic while staying at a healthy distance. Participants are mailed or can arrange to pick up or get delivered bingo cards and receive a Zoom link.

From there, it's like any other game of bingo. The Lions draw letters and numbers, and attendees must show their card on camera, as well as a pattern on the back, to verify whenever they get bingo.

While certainly a different set-up from normal, the game has proven popular, Peters said. and for such a good cause, she's aiming to go big this time around.

"Gosh, I would really love to get 100 players on the Zoom bingo screen," she said.

Interested participants can sign up by visiting the Meadville Lions Club website, meadvillelions.com, and paying online. It is $20 to enter for five games of bingo, four following the standard format, and the fifth being a "cover-all" game where players must fill every square to win.

Each participant will receive two bingo cards, which will be mailed to them. Alternatively, they can contact Peters at either or by phone at (814) 337-9065 to arrange another way to get their card. People can also contact Peters if they wish to pay through a way other than on the website.

For anyone uncertain about playing online or are unfamiliar with Zoom, the Lions will run a test game Tuesday from 7 to 8 p.m. where they will go over how to play and the various functions of Zoom.

The jackpots for the first four games are $50, with a $100 jackpot for the fifth game. In addition, the Lions Club has six Amazon gift cards they will be giving out.

For Lex's parents, they're hopeful the hometown effort will help them get the funding they need to save their son's life. Lex has already beaten the odds, with doctors initially saying he would not live long after his diagnosis at 14 months. Today, he is 4-and-a-half years old, and is staying positive.

"He's awesome," Corbett said. "I've never met a happier kid."

On top of getting him the treatment he needs, the move will allow Lex to be much closer to his family on his mother's side. Neither Jacob nor Corbett are native to England and have little-to-no friends or family they can have for support in their situation.

"We want to bring him home to his country," Jacob said. "We are all guests here."

In addition to the bingo fundraiser, there is a GoFundMe page for Lex, which, as of Friday afternoon, has raised just over $6,000. Anyone wishing to support the GoFundMe can do so by visiting gofundme.com/f/save-little-lex-usa.

Sean P. Ray can be reached at (814) 724-6370 or by email at .