Family of Joliet Girl with Rare Terminal Disorder Raising Money for Research

JOLIET, IL — Little Madison has been through a lot for her eight years on Earth. Too much for any little girl to bear. But she does it with a smile.

Just last year Madison had surgery to remove a cyst on her brain. At that time, she was diagnosed with multifocal complex partial and simple partial seizure disorders.

Two weeks ago she was also diagnosed with Beta-propeller Protein-Associated Neurodegeneration (BPAN), a neurodegenerative brain disorder for which there is no cure, according to Madison’s mom, Krystal Bettega.

For eight years, Madison’s family knew there was something wrong, and now they finally have an answer, but no cure.

“Basically all we can do is continue with the therapies and go down the road we’re going,” Bettega said.

There are fewer than 100 cases in the world, Bettega said, which makes funding for research scarce.

“It’s basically left to the families,” she said.

To save her daughter’s life, and the lives of other children affected, Bettega is holding a fundraiser to spread awareness and raise money for research.

“We need to get the researchers the funding they desperately need so we can search for a cure,” Bettega said.

Madison, a Joliet resident and student at Plainfield School District 202, is severely myopic and nonverbal, but that doesn’t stop her from smiling.

“She’s the happiest little girl,” Bettega said. “She loves to give hugs and high-fives. She is very sympathetic to people.”

Since Madison had the surgery to remove the cyst, she’s come a lot farther cognitively, her mom said, but communicating is still difficult for her.

“She does want to communicate so badly, she’s just unable to form the words.”

Unfortunately, Madi's disorder is terminal. Sometime between her teens and early adulthood, she will enter a phase of rapid onset neurological deterioration.

“She’ll basically lose all of the skills we worked so hard to gain,” Bettega said. “She’ll end up in a wheelchair. You know, that’s rough.”

But Bettega is trying like hell to prevent that.

On Saturday, Sept. 24 from noon to 5 p.m., a fundraiser will be held at Anthony’s Restaurant and Pub, located at 3151 Voyager Ln. in Joliet. There will be live bands, food, a cash bar, silent auction and a bean bag tournament. Tickets are $20 and it's requested that you RSVP.

“I would love for people to come out and meet Madi,” she said. “I’m sure she’d love to give them a hug.”

This isn’t a fundraiser to help with Madison’s medical bills and travel expenses, though. All of the money raised will go directly to the NBIA Organization for BPAN research, Bettega said. She's also connected with other families who have a child suffering from BPAN. The fundraiser isn't just for Madison, it's for everyone.

"I know all of these families are just as desperate as I am," she said.

If you can’t make it to the fundraiser, you can also donate online.