A 4-month-old baby boy who has spent his life in the hospital has new hope. Anthony Schmitz is fighting Spinal Muscular Atrophy, the leading genetic cause of infant mortality in children under 2. Children living with the condition struggle to hold their heads up, breathe, and swallow.
Anthony’s hope comes in the form of Zolgensma, the first gene therapy approved to treat children less than two years of age with spinal muscular atrophy. The medication costs over $2 million. Anthony’s mom, Louise Johnson was crushed when Indiana Medicaid initially denied her claim for the medication. After filing an appeal, it was approved.
Anthony got his first dose of the medication shortly thereafter. “Amazing,” Louise said in footage provided by WTTV. “I want to see him live forever. No mom wants to bury her child, so I just want to see him grow up with his brothers and play with his brothers.”
Louise’s three other sons were not born with SMA. She hopes that this medication will give Anthony the opportunity to have a better life and be able to spend some time with his brothers.
“Not knowing when we were going to say our goodbyes or how long we would have with him,” she said. “I am hoping one day he can breathe on his own without a ventilator. That is my hope for him.”
Dr. Larry Walsh is optimistic that this medication will help Anthony. “Does his respiratory function improve? Is he able to work more fully without as much ventilator support? When he does not need to be in a ventilator, that would be a tremendous win for his family.”