Amanda Beedle hands out alliterative stretchy support bracelets, “Beedles Braving Batten.”
Those items refer to youngsters Annabelle, 6, and Abigail, 3. The girls, the daughters of Amanda and Adam Beedle, of St. Anne, have a rare inherited disorder of the nervous system, Batten disease.
On June 10, the Beedles will host a 5 kilometer fun run and picnic at the Kankakee River State Park to raise funds for Batten Disease Support and Research Association. The cost of the event, including a box lunch, is $25.
Persons can contact Amanda for information, sponsor the event or donate a prize for the raffle at <a href="mailto:beedlesbravingbatten@gmail.com" target="_blank">beedlesbravingbatten@gmail.com</a>. To register and select a T-shirt size, go to <a href="https://www.web.charityengine.net/BBB-IBAD-2023" target="_blank">web.charityengine.net/BBB-IBAD-2023</a>.
Persons who sign up by May 26 are guaranteed a T-shirt.
The event is a fun run. There is no timing and no awards at the end, but there is the assurance of doing a good deed. Runners, walkers and strollers can participate. The fun run activity begins at 9 a.m. The run and its affiliated festivities will end by 2 p.m. The out-and-back course begins near the main entrance to the state park, where the sign reads “Potawatomi Campground.” For those not registered in advance, race day registration will begin at 8 a.m.
Amanda hopes the event will spread the word about the very rare disease. According to the Centers for Disease Control and Prevention, the BDRSA reports, Batten occurs in 2-4 births per 100,000 in the United States. While there is treatment, there is no cure.
“While our ultimate goal is to raise awareness,” Amanda said, “the bottom line is to have a great time.”
June 9 is National Batten Disease Day.
She hopes for a non-competitive event that is open to all and a fun time for families. Children’s games and activities will be included. This will be the third annual fun run. The first attracted 60 folks. Last year, they had 100. They are hoping for 200 this year.
“We want to keep growing,” she said.
In the case of rain, the event will move to the Warming House at Olivet Nazarene University.
The lunch for all, she said, will be a mix of donated and home-cooked foods. Pulled pork sandwiches will be featured, along with salad and a dessert. There will be a raffle. Top prizes gathered so far include a year’s membership at FitBodyU, flowers from Flatrock Company and a bubble machine from All Power Equipment. More donated prizes would be welcome. Sponsorships are also being sought and begin at $100.
The Trifecta Professional Dance Company will have an interpretive modern dance as part of the opening ceremonies.
There are 13 types of Batten. It is difficult to diagnose and is often misdiagnosed as autism, seizure disorder, epilepsy and pervasive developmental disorder, according to the BDSRA. Amanda said that once Annabelle was diagnosed, the family had Abigail tested. The Beedle girls have CLN2 Battens, and were the first ever diagnosed with that rarest form of the disease at Lurie Children’s Hospital in Chicago.
Treatment for the disease involves an injection of Brineura, a relatively new-engineered enzyme. Abigail was reportedly the youngest patient ever to get Brineura. Every week, Amanda has to bring one of the girls in for their injection. There are also regular trips to physical and other therapies.
Father, Adam Beedle is a union ironworker. Mom, Amanda was a nurse at the Illinois Veterans’ Home in Manteno, but is now a full-time caregiver for the daughters. While the family has insurance, there are costs, including transportation. Individual donations to help the Beedles with their expenses can be made through the GoFundMe page, “Beedles Braving Batten.”