Rally for Remi: Family raising awareness for baby living with spinal muscular atrophy

Baby Remi is now 6 months old.

Her parents say when she was born everything seemed normal, a few months later something changed.

"At three months, we were raising questions on her movement, head control, feet control," said father Alex Sizemore.

Her parents, Coral Friend and Sizemore, say they brought Remi in for testing and learned she had spinal muscular atrophy.

SMA means there’s a loss of motor neurons in the spinal cord and lower brain stem.

It can cause paralysis, and difficulty breathing and swallowing.

"When we first found out, we took a week and sobbed," said Sizemore.

There's no cure for SMA but there is an FDA-approved medication that Remi was put on.

"It just got FDA approved. The numbers are ridiculous, but we don't know how much insurance will cover," said mother Coral Friend.

Remi's parents say the community has tried to help with those expenses and has raised more than $6,000 for her.

"It's an expensive lifestyle. It's hard," said Friend.

Remi's family said they have used social media as a way to learn more about SMA from other parents, and also share what they’re going through.

They also held get-togethers to raise awareness about SMA.

"It's fun to gather around something so serious and have a good time and raise awareness," said Sizemore.

Remi's parents say it's just the beginning of their journey but they hope to learn more and educate people along the way.

Cox Media Group