The community is opening its heart to support two terminally ill children in Kankakee County.
Annabelle, 5, and Abigail, 1, are the daughters of Adam and Amanda Beedle of St. Anne. Both have been diagnosed with Batten Disease, a fatal type of genetic nervous system disorder. The disease affects one out of every 25,000 persons. There are 14 different types of the illness and the Beedle children were the first-ever diagnosed with most rare CLN2 Batten’s at Lurie Children’s Hospital in Chicago.
There are physicians, Amanda says, who have never even heard of the type of Batten’s her children have.
Angela Chouinard, a friend of the Beedles who is organizing a fundraiser to help the family, says there is no known cure. A child may appear to be developmentally normal before the disease emerges. Then, sadly, the disease causes a “decline in thinking ability, functional ability, loss of vision” and seizures.
A GoFundMe Page for the Beedle Family Fund had 346 donors and had raised $68,651 as of Saturday. To find the page, search for Beedle at GoFundMe.com.
“They have and will continue to have immense medical expenses,” the website reads. “Our hope is to support them while they try to make every moment with their two little girls special. We pray that finances will become one less worry that they endure during this time.”
There is a treatment, Chouinard says, to slow the progression of the illness, but “there have been no documented survivors into adulthood.”
Some of the money, Amanda says, will pay for the medical-assistance devices the children will eventually need.
Moved by the medical tragedy, Chouinard transformed her planned wedding reception into a benefit for the family. The Beedles have insurance, but not everything is covered. Their transportation costs include weekly trips to Lurie Children’s Hospital in Chicago and a monthly drive to Ohio to see an eye specialist to slow the descent into blindness.
Chouinard got married last fall to Brennen, but COVID made a reception impractical. Brennen is a close friend of Adam Beedle, Annabelle’s and Abigail’s father.
“It didn’t seem right to spend money on myself,” Angela says.
Instead, what will happen is a near day-long event Saturday, Sept. 11, at the Aroma Park Boat Club. There is no admission fee, but there will be fundraising raffles and auctions from 2 p.m. until as late as 9:30 p.m. Entertainment will be provided by Lupe Carroll, the Bourbonnais singer who appeared on “The Voice” and local bands, the Vaudevillians, Beeso and Friends, and The Silhouettes.
The Neighborhood Kitchen will be there, selling eggrolls, with a portion of the proceeds benefitting the Beedles.
Chouinard says that more than 200 merchants, neighbors and crafters have given items to be auctioned or raffled off. Her basement, she says, looks like a department store. The top prize is a weekend in Indianapolis.
Chouinard says the day will be family oriented. The Beedles will be there, she says. Children are welcome and there will be a bounce house.