KANKAKEE COUNTY, Ill. - It was an incredible act of kindness in Kankakee County, as a couple turned their wedding reception into a fundraiser for a family in need.
Angela and Brennen Chouinard tied the knot during a not-so-elaborate ceremony last September. They had planned to host a large reception this month.
"When we found out about their diagnosis, I just didn't feel comfortable about pursuing the wedding reception option anymore and I just figured we'd transform it into a benefit for them," said Angela.
Last weekend, they used the event space they had already booked including entertainment and food to benefit their close friends, with two little girls, who had recently received a heartbreaking diagnosis.
Dr. Sandi Lam is the girl’s physician at Lurie Children’s Hospital.
"Only about 20 children in the United States are born with this disease per year," she said.
Late last year, after experiencing seizures and a loss of balance, 5-year-old Annabelle was diagnosed with CLN2, a form of Batten disease, which is a rare and fatal genetic nervous system disorder.
Her sister, 1-year-old Abigail, was tested and has it too.
"We would like doctors to know about this because a lot of doctors have never heard about this disease or if they have, it was in passing," said Adam Beedle, the girls' father.
Abigail is now the youngest patient in North America to receive treatment for the disorder.
"The whole world studying this disease is watching to really support these girls and really cheer on how well they are doing," said Dr. Lam.
Every two weeks, the girls travel from St. Anne, Illinois to Lurie Children’s Hospital where they receive a 10-hour enzyme infusion that essentially cleans out toxins in their brains. It’s something their bodies can’t do on their own.
Without treatment, children lose their ability to walk, talk and see. Life expectancy is late teens, and there is no cure.
Since receiving the treatment, Annabelle has been able to do things she couldn’t do before, like summersaults.
"It has offered them and offered Annabelle being older, a quality of life that children before never knew," said Amanda Beedle, the children’s mother.
At the reception, it was a celebration of a new life together for Angela and Brennen, and a new lease on life for the sisters, who will be receiving the treatment for the rest of their lives.
The event raised $26,000 dollars for the Beedle family. They will use the money for medical equipment that’s not covered by insurance. The family also has a GoFundMe page.