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Local family shares their journey battling rare disease

Local family shares their journey battling rare disease. (WJAR)
Local family shares their journey battling rare disease. (WJAR)
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Another Rhode Island family is speaking publicly about their battle with Acute Flaccid Myelitis, a rare disease that affects the nervous system.

After NBC 10 News reported 5-year-old Isaiah Hazard of East Greenwich was diagnosed with the polio-like illness, another East Greenwich family reached out to NBC 10.

The parents of 9-year-old Scarlett Ruff said she started experiencing symptoms in August of 2016, and her condition quickly deteriorated.

"Her face had become so paralyzed she couldn't speak, her throat so paralyzed she couldn't swallow her own saliva, she was being suctioned and she lost complete function of her right arm other than her wrist down," said Shannon Ruff, Scarlett’s mother.

"I had tube go up my nose, down my throat and into my stomach and use a syringe and suck up liquids and just put it through and it was really weird," said Scarlett, a 4th grader at Eldredge Elementary School.

Initially misdiagnosed, her mother said Scarlett was originally treated for a condition similar to AFM and received a heavy dose of steroids when she was first brought to the emergency room, which her family believes helped mitigate the long term effects of the disease.

Now, two years later, she’s seen marked improvement.

After treatments and therapies, including nerve transfer surgery, Scarlett's recovery is something her parents initially never imagined.

"I'm able to raise my hand, I used to never even be able to move it. My arm's improved, I've been able to eat more stuff than usual," said Scarlett.

"We still have a little trouble swallowing and some facial paralysis, but from where we were to where she is now, she's come a tremendous way," said Jeremy Ruff, Scarlett’s father.

The Ruffs received support from many places, including a video of encouragement for Scarlett from Patriots Quarterback Tom Brady.

They also found available resources in a closed Facebook group consisting of parents of children with AFM, which made them realize they’re not alone.

"So it's a great support group, but great place to get information," said Shannon.

After learning about the increase in cases nationwide, the Ruffs wanted to share their story in hopes of helping others.

Jeremy offered this advice to other parents, "It happens really fast, and if you start to see weakness you want to seek treatment as fast as possible to kind of slow down that progression."

Shannon says families affected should not give up hope.

"It’s a long battle, but there are victories along the way."

As their daughter continues to recover from the devastating illness, they want to continue raising awareness in hopes to one day put an end to the disease.

"We hope that our kids are going to be the last kids that have to have this,” said Shannon who added that learning of a new wave of cases “was a punch in the gut, that we have more work to do."

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