Pana mom raises two children with rare disease -, NewsCenter17, StormCenter17, Central Illinois News-

Pana mom raises two children with rare disease


It's rare to happen once. To Becky Cox, it happened twice.

"They're basically a normal child stuck in a disabled body," Becky said.

Both of her daughters, Gabby and Cashlynn, are diagnosed with Spinal Muscular Atrophy, a genetic disease that causes muscle weakness. It affects just one in every 6,000 babies, and both of her children have Type One, the most severe kind.

"They're just like rag dolls," Becky described.

They breathe through a tube, they communicate with their eyes, sometimes with a faint finger movement, a head wobble or with a smile.

"You can tell that they are very smart," said Beverly Beck, Becky's aunt. "They can tell what's going on."

Like the recent death of their father.

"He was the best daddy in the world," Becky said.

"He was a kid," Beck said. "That's how he would interact with the kids and stuff."

Jake Cox died unexpectedly in April.  Becky was never able to get a family photo of everyone together before her husband died.

"He was the brawn, the muscle behind us all. The backbone behind us all," Becky said.

Now Becky has tried to be the backbone for everyone.

"Now I've stepped up and have to be like Jake," she said.

Nurses are in and out of her house, but Becky is constantly caring.

"It's just me and my girls and just sittin' in the house," she said.

Most children with this disease die before the age of two, but with mom's help, 11-year-old Gabby and 19-month-old Cashlynn are still going strong. 

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