ALTON – Metachromatic Leukodystrophy (MLD) is a rare degenerative disorder affecting as many as one in 40,000 people.
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There are several forms of the disease, and each form is named for the period of life during which it strikes. The younger the sufferer, the more aggressive the disease, with children under four years old being the most commonly affected. When it strikes at that age, children lose the ability to use their limbs as their muscles degrade over time. Eventually, they are put into a vegetative state, and most children do not live beyond five or six years after their diagnosis.
This dismal prognosis was recently handed down to 2-year-old Mabel Rench. Rench lives in Virginia Beach, Va., and can seldom leave her team of doctors at Duke University. She has several family members in the Riverbend, however, and her mother and father, Katie and Caleb Rench, are originally from the area. Caleb is a member of the U.S. Marines, which took him from his Brighton home.
While the couple and their young child are on the East Coast, Mabel Rench's uncle, Sam Plunkett, is working toward finding a way to make the lives of his sister, niece and brother-in-law easier. He said he plans on moving to that area later this year, but, before he does, he wants to do something for Mabel Rench and eventually everyone given this daunting diagnosis.
Through his efforts, the Miracle for Mabel movement was born.
"Katie and Caleb didn't ask for this or anything,” he said. “They have insurance from the Marines and everything, but even then, this gets expensive. Katie (Rench) is now a stay-at-home mom. Her job now is taking care of Mabel. She has an incredible work ethic, and everyone here knows her. She's worked at several of the bars in town while putting herself through school. They didn't deserve this, and I'm trying to see what I can do to help.”
Since it affects such a small number of people, MLD does not have a financially-rich backing for a cure like more common diseases may. In fact, Plunkett said the future of MLD treatment may not occur after diagnosis, but instead before a child is born with it.
“They do a lot of gene therapy,” he said. “It can change the odds of a 45 percent chance of a child contracting the disease to a 95 percent chance that they won't. That's the future there – gene screening and possibly even editing the genes to prevent it.”
In the meantime, to give Mabel, Caleb and Katie Rench an easier time to cope, the Miracle for Mabel movement is collecting a lot of community support.
On Aug. 11, there is a golf tournament at Woodlands Golf Course. Tickets are $100 a person for teams of four people. Those tickets include beer, golf and a barbecue lunch made by “Chef Bob.”
Another event will take place at the Loading Dock in Grafton on Aug. 18. Katie Rench once worked as a bartender at the Loading Dock, Plunkett said, for a few years. Tickets to that benefit are $40 in advance or $50 at the door. They can be purchased at Decaro's Italian eatery or by calling Plunkett at (618) 567-4726.
Tickets to that event will include beer and food as well as a performance by local favorites, Mondin Band. There will be a “Kid's Corner” with activities for children supervised by Marquette Catholic High School students so parents can bring their kids and everyone can have a good time. There will also be a bake sale, silent auction and basket raffle.
Originally planned to be a celebration for everyone helping with the Miracle for Mabel movement, a third event has been added to the roster as well. On Aug.19, there will be a bags and barbecue tournament at Barth Park in Alton. Bags, also known as Cornhole, will be played, and tournament tickets are $25 a person. They include barbecue.
The Alton American Legion, which is diagonally across the street from the park, will be open for people to enjoy some beverages during the tournament as well.
All of the events will feature several giveaways, 50/50 raffles and door prizes. More information can be found by calling Plunkett or by checking the Facebook group. T-shirts, beverage coozies and bracelets are also available through Plunkett. Donations are also being accepted for any of the events.
