A family lost a child from a genetic disease that might be more common than you think.
The still grieving mother and an Arkansas legislator are hoping to pass a bill to make sure – Spinal Muscular Atrophy – is checked when a baby is born in the Natural State
Emily Ainsworth – Orfan has a handful at home with her 4-year-old son.
But she can’t help to think, Teddy could’ve had a couple more playmates.
“What really crippled us was that it was a gene we both had but we didn’t know about it and we should’ve known,” Orfan said.
After the Cave Springs mother delivered a stillborn baby – her and her husband decided to try again.
On November 27, 2017, the Orfan’s were ready to welcome their baby boy into the world.
The newborn was diagnosed with Spinal Muscular Atrophy.
Three weeks later Truman died – leaving the couple to now grieve two children.
“It’s hard to believe if it wasn’t for SMA our family would have three children,” Orfan said.
SMA is a genetic disease that breaks down the nervous system – causing the brain to stop sending messages to muscles.
The disease affects about one in ten-thousand infants and symptoms typically begin early
There are treatments for SMA but timing is everything.
That’s why Senator Bart Hester from Benton County is introducing a bill in the 2019 legislative session to provide parents with the information as soon as possible.
“If it’s a newborn in Arkansas, they would be tested for SMA, whether it’s through private insurer or Medicaid,” Senator Hester said.
Orfan says her family isn’t complete just yet.
But while she waits for a safer procedure, she holds on to the faint but strong memory of baby Truman.
“It’s the difference between your child dying and living a flourishing life,” Orfan said. “If that means I have to share our story from the scientific side and psychological side then I will do it.”
This bill would test newborn but Orfan hopes this is a stepping stone to test mother’s for SMA before they even conceive.
A local organization – the Miller McNeil Woodruff Foundation – raises money for SMA research.
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