The Grapevine

Mother Of Infant With Neuromuscular Disorder Wins $2M Appeal

According to recent news, a mother from Indiana reportedly refused to give up on her infant child who’s suffering from a neuromuscular disorder despite an insurance company blocking her with a $2 million price tag along the way.

A Mother’s Love

Four months ago, baby Anthony was born. And while the birth itself is normal, the baby is apparently born with spinal muscular atrophy, which is a neuromuscular disorder that robs Anthony with the ability to walk, eat or breathe. Because of this, he has been hooked up to machines at River Hospital in Indianapolis for most of his life. Per statistics, the disease is the number one genetic cause of death for infants. As such, his mother Louise Johnson only makes trips back home to their house in Evansville every two weeks.

"We were not given an exact timeline of his life but we said up to two years is what we were told. Not knowing when we were going to say our goodbyes or how long we would have with him, if we would have his first birthday with him," Johnson said.

The problem, however, is that treatment options for the disease is both limited and expensive, costing more than $2 million per dose.

As such, she recently went to her insurance company Indiana Medicaid for help. However, the company denied her claim, pushing Johnson to file an appeal. Thankfully, the program approved it.

"No mom wants to bury her child, so I just want to see him grow up with his brothers and play with his brothers," Johnson added.

And so, the baby is now able to receive his medication recently through an IV and the family is now waiting to see whether it will work.

Thankfully, Dr. Larry Walsh, a pediatric neurologist and baby Anthony’s doctor, is optimistic.

"Where we do help his respiratory function when he does not need to be in a ventilator things like that, that would be a tremendous win for him and his family," Walsh said.

For Johnson and her child, it’s a chance at life, one with better quality than the one presented before.

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