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Saving Sage: One-year-old from Florence fighting rare disease

Published: Jul. 21, 2021 at 6:11 PM CDT
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FLORENCE, Ala. (WAFF) - Parents in Florence are on a mission to save their 1-year-old son after he was diagnosed with a rare form of muscular dystrophy.

WAFF’s DeAndria Turner sat down with the family about their journey and found out how you can help.

It’s things as simple as a laugh that Savanna Spires doesn’t take for granted when it comes to her children, especially her 1-year-old son, Sage.

“I wouldn’t be where I was at today without my babies,” Spires said.

Just last week, Sage was diagnosed with L-CMD, which is a rare form of muscular dystrophy

“I can’t imagine my life without him in it.”

Less than 200 children across the world have this disease, making it especially rare. Statistically, children with the disease live less than 18 years and succumb to respiratory insufficiency or heart issues.

Doctors say they don’t think Sage will live to see his 3rd birthday.

“The neurologist in Texas told us that on the way home from the hospital because it’s progressing as fast as it is,” Spires explained. “I will go anywhere or do anything to make sure he’s OK,”

That’s why Savanna and her husband are on a mission to break that statistic. Not only for Sage, but for all children with L-CMD and families just like their own.

The family started the fundraiser, “Saving Sage,” to help with Sage’s medical bills, but also search for treatment and a cure.

“I hope that we can continue to raise money and spread his awareness. When we do find that doctor that can start the research for the cure, we have that money for what we need. I am just trying my best to take him to every doctor that he needs to see, a cardiologist,” she added.

So far, people have already donated more than $6,000 in less than a week.

“Just to see that everyone was jumping in and helping... I never thought that people would donate and be as nice as they’ve been to us,” Spires said.

The mother said this fight is far from over.

“I will go anywhere or do anything to make sure that he is OK,”

If you’d like to donate and join in to help save Sage, you can learn on his fundraiser page, which we have linked here.

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