LE CLAIRE, Iowa - Spunky twelve year old Madi Ramirez with her sidekick Nora always has a bow in her hair with a special message on it, Cure SMA.
Madi was diagnosed with Spinal Muscular Atrophy Type 2 in 2008, a disease that takes away the ability to walk, eat or breathe.
"He told us that it was a fatal disease and the crawl that she had right now, she would eventually lose that crawl, that she'd be in a wheelchair the rest of her life and maybe she would live to be into her teens," said Megan Ramirez, Madi's mom.
The family was not giving up on their then 2-year-old, they built parallel bars to help her progress.
"By the time she was four, I'll never forget the first day that she took her first steps, we were actually at Walgreens and she walked to go get candy," said Ramirez.
For many years Madi was walking and standing by herself, she was beating the odds, until last year when the disease took control.
"Last year was a really hard year, she lost her ability to walk completely, she really can't pull much to a stand anymore," said Ramirez.
In December of 2016 the FDA approved the treatment Spinraza, it was a sign of hope for Madi.
With a price tag of $275,000 for every dose it was a fight with insurance to get approval.
Now Madi's gotten five doses that have made a big difference.
The drug isn't considered a cure, she needs a shot every four months to help rebuild lost muscle.
"In her mind, she thinks she can and she's gonna keep going until she can do it," said Ramirez.
If you meet Madi, you learn fast that she's a fighter, pushing herself to do more each day.
"As much as this disease is a curse, she's a blessing and she's given us so much more than you ever would expect," said Ramirez.
She's the reason this family will keep fighting to find a cure for SMA.
The family is holding the third annual "Evening of Hope in honor of Miracle for Madi."
It will be held at St. Ambrose University on Friday, February 16, 2018. Tickets are $75.
They are still looking for sponsors and four men to be sponsored in tuxes. For more information on how to get involved click here.
