Baby initially denied $2M treatment for genetic disease leaves hospital for 1st time in his life

Baby finally heading home after $2.1 million drug treatment

INDIANAPOLIS (WISH) — It’s a story almost guaranteed to put a smile on your face and maybe a tear in your eye: the amazing recovery of a 7-month-old boy who is the recipient of the most expensive drug in the world.

His mother said if it wasn’t for News 8, it may not have happened.

Our camera was the only one there Friday morning as little Anthony Schmitz left the hospital for the first time in his life.

“Finally going home,” said his mother, Louise Johnson.

The words “home sweet home” are ones that she will never take for granted. But that’s where she’s going.

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It’s a place Anthony has never been. Friday was the first time he’s ever left Riley Hospital for Children since he was born Sept. 4.

“Gene therapy, it worked,” said Johnson.

News 8 first met her two days after Christmas.

Anthony has SMA1, a severe form of spinal muscular atrophy.

Indiana Medicaid denied him a genetic therapy called Zolgensma because the baby was on a ventilator.

Four days after we spoke with her and reached out to the state’s Family and Social Services Administration, which oversees the Medicaid program, he was approved.

“We didn’t think it was going to happen and when you called Medicaid and told them, ‘Hey, we’re going to air this that you’re denying this baby,’ they approved it. So thanks to WISH-TV, we got it,” she said.

News 8 was in the hospital on Jan. 8, when Anthony got the Zolgensma treatment.

It’s the most expensive drug in the world: One hour for the single dose costs $2.1 million.

When he received the treatment, no one knew how he would respond — including doctors — because Anthony is one of the most serious cases to get the infusion.

Now, just 10 weeks later, he’s made tremendous progress.

“He can move his arms and legs, he grabs stuff, stuff he never would have done,” said Johnson.

He can even try to roll away when he’s angry.

Most importantly, he’s up to breathing on his own eight hours a day, though he’s on oxygen for the three-hour drive home to Evansville.

His mom didn’t think this day would ever come: “No, I really thought we’d still get a trach.”

It’s also time to say goodbye to Louise’s second home in all this, the Ronald McDonald House. It’s the place she’s been living for 28 days a month, separated from her three sons and her fiance, Derek Schmitz.

Friday marks three months to the day since the brothers last got to visit Anthony.

Flu and coronavirus restrictions even kept Derek outside the hospital.

“This will always be my second home, always. I love the Ronald McDonald House,” said Johnson.

So while millions can’t wait to leave their house in the pandemic, she can’t quite relate. She’s ready to go home.

“I don’t think it’s hit yet that we’re actually, I think once we get on the highway, we’re going home. It will really hit.”

According to the group Cure SMA, spinal muscular atrophy is the leading genetic cause of death in infants and affects about 1 in 11,000 births.