WACO, Texas — The community of West is rallying around a Waco teen who suffers from a rare, inherited degenerative disease called Friedreich's ataxia (FA).
It's something not many people, even doctors, know much about.
"It's changed pretty much my whole life all my original plans and dreams," Madison Hardwick said.
The 19-year-old was diagnosed in 2020 following months of tests.
"At the beginning of my diagnosis, I didn't want to accept it," Hardwick said.
It was tough news for the entire family.
"They were hoping it was a vitamin deficiency or something with her diet and we prayed and prayed and of course it's never that easy," Bobbie Hardwick, Madison's mother said.
FA is a rare, inherited neurological disease that affects the nerves and muscles.
"Friedrichs ataxia affects my balance, coordination, mobility for the most part that’s the most visible thing," Madison said.
Dr. Keith Horner, Madison's doctor, said it's the first time he's seen the disease in his 35 years of practicing medicine. According to him one in 30,000 to 50,000 Caucasians develop it.
"It doesn't happen very often but when it does it's devastating," Dr. Horner said.
Dr. Horner said slurred speech, hearing loss, and vision problems are also common symptoms that get worse over time, and can also affect the heart.
As a degenerative disease, symptoms can get worse over time. And much to the Hardwicks' dismay, there is no cure.
"You got to have hope, you can't give up on hope," Dr. Horner said.
There are treatments that can help slow progression.
"I do physical therapy and occupational therapy and aquatic therapy," Madison said.
She does an hour of each type of therapy weekly but the costly sessions are not covered by insurance.
"It’s really hard for insurance to say that physical therapy isn’t medically necessary for me when it’s the only way I can postpone progression," Madison said.
Jeni Janic has known Madison's extended family in West for years. When she heard about the diagnosis through the grapevine she said she knew she had to do something.
"I am very inspired by how strong Madison has been and her family has been in this," Janic said.
She is helping to organize a benefit in West October 24 with others in the community called "Miracles for Madison." All proceeds will go to Madison's therapy bills and FA research.
The event will take place at 11 am at the Knights of Columbus Hall located at 2547 Jerry Mashek Drive in West.
There will be bbq plates, a live auction, silent auction, and raffle tickets towards some great prizes and a chance to learn more about Madison and Friedreich's ataxia.
"It's really a beautiful thing to know that you are putting your effort in and all the people that have come together to support the Hardwicks support Madison. It's a wonderful feeling," Janic said.
The Hardwicks said they are thankful for all the support.
"It’s amazing. People that I don’t really even know are coming and supporting my girl so it makes me feel awesome," Bobbie Hardwick said.
Madison said despite the unknowns she is going to give it her all always.
"Life is still worth living and I can still have a fulfilling life," Madison said.
If you would like to donate to the family you can by giving a donation through Venmo @MiraclesforMadison.
You can also purchase a Miracles of Madison t-shirt.