January 06, 2019 07:21 PM
When Vincent Holte arrived in the world at a hospital in Monticello on Nov. 30, his parents had the same hopes for their child as every parent - to be happy and healthy.
And for the first week of his life, they thought their child was on his way to a healthy and happy life. Then they received a devastating phone call from the hospital.
"You think, 'Oh, my baby's perfect,' and they told me that he was diagnosed with Spinal Muscular Atrophy," said Mikah Tyler, Vincent's mom.
The diagnosis came following a routine newborn blood screening shortly after he was born. Minnesota has been a leader in newborn screenings for dozens of diseases since the mid-1960s.
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Spinal Muscular Atrophy (SMA) is a rare genetic disease that causes debilitating and often fatal muscle weakness. Vincent has SMA Type 1.
"With SMA Type 1's they would basically tell you, you know, go home, love your child as much as you can because you won't have that much time with them," Mikah said of how infants used to be treated.
Now, though, there's a growing number of drugs to help fight the disease.
Vincent is currently being treated with Spinraza, a drug approved in 2017. It was the first drug approved for SMA.
Now they're hoping to get approval for treatment for another new drug under consideration by the FDA. It's a gene therapy Vincent's parents said they've been told could stop the disease in its tracks rather than just slow it down.
"I just don't want to have him bedridden the rest of his life hooked up to machines," his father Kyle Holte said.
Vincent's doctor is working on getting him early approval.
Kyle and Mikah remain hopeful, but they know there are no guarantees for the first kids to receive new drugs.
"It's such a new thing they're basically like the little road map pioneers to figuring out how it's all going to happen and what that's going to mean for the next generations that are going to receive it," Mikah said.
Family and friends have started a GoFundMe page for the family to help with expenses that aren't covered by insurance.
Updated: January 06, 2019 07:21 PM
Created: January 02, 2019 07:02 PM
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