Madison Reed will celebrate her 16th birthday next week.
When she was just four months old, her parents were told by doctors she wouldn't make it past age two.
“We still have hope for Madison. They're still working on a different avenue for replacing the gene for older kids,” said her mother, Annette Reed.
Madison was born with a rare neuromuscular disease called Spinal Muscular Atrophy, or SMA.
“There are very few Type 1 SMA children who have survived to the lengths that Madison has,” said Dr. Brian Kaspar of The Ohio State University.
Kaspar said SMA is the leading genetic killer of children under the age of two.
Madison’s father, Carl Reed, last week led a group of his Dublin Coffman high school students to the Inauguration in Washington. He said his daughter is a reminder of the importance of government.
“The National Institute of Health asked themselves the question, 'Which disease can we cure, which care we eradicate?' and they answered their own question by saying “It's spinal muscular atrophy,” said Carl Reed.
No one disputes the importance of pediatric research, and it’s an area that has brought together both of Ohio's US senators.
“There is not the coordination there needs to be, because every Children's Hospital is doing its own research,” said Sen. Sherrod Brown.
Brown is working on legislation, backed by his colleague Sen. Rob Portman, which would help researchers share information on rare diseases, giving hope to thousands of affected children and their families.
The Reeds have established the "Miracle for Madison" Fund. Over the past decade, it has raised $1.3 million dollars for SMA research.
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