Riley family raises awareness for rare, deadly genetic disease

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INDIANAPOLIS, Ind. — It’s a nursery new parents could only imagine with stuffed animals and a family photo. But now that room is a memorial for Corinne Shields.

"It’s not something we ever anticipated," said Alysen Shields, Corinne's mother. "It doesn’t make sense when it’s a baby, but it's reality."

Corinne was born in October 2017. Her parents say it was a normal birth, but they started to have questions shortly afterwards.

“We started to notice her wrists were kinda floppy, almost as if she didn’t have control of them,” Alysen said.

During her first few months, Corinne didn’t have much of an appetite and wasn’t gaining weight.

"There’s the concern and heartbreak of what does she have, and how are going to get this figured out?" said her dad Gareth.

At Riley Hospital for Children, they finally got some answers. Corinne was diagnosed with spinal muscular atrophy or SMA. It’s a rare genetic disease, that often can be deadly.

For nearly 3 months they moved to Chicago for a $500,000 treatment, but the problems didn’t end. Doctors told the family to prepare for the worst.

“We brought her home May 18th, and we just decided to make it the best summer ever for her."

From zoo visits, to picnics at the park, the family soaked up as much time together as they could.

10-month-old Corinne passed away on August 10.

“We love stories about kids that beat the odds and they’re miracles, but that’s not the reality of the world,” Alysen added.

Corinne’s story doesn’t end there.  Her family is determined to keep her light alive and teach others about the dangers of SMA.

A few months before Corrine passed, Indiana became the fourth state in the country to add SMA to their newborn screenings.

The Shields’ nursery won’t be empty for long. They’re expecting their second child this summer.

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