‘Finally time to go home’: Child with spinal muscular atrophy leaves hospital after months
AKRON, Ohio (WJW) – At 14 months old, Marshall Bowling of Millersburg seems a happy little boy, but his journey to this point has not been easy.
His challenges started soon after he was born when newborn screening led to a diagnosis of a genetic disorder called spinal muscular atrophy.
“Honestly one of the worst things you would ever want to hear. Without treatment, most kids don’t live past two years old,” said his mother Eve Freeman.
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They were referred to Akron Children’s Hospital where specialists have begun using a breakthrough gene therapy to treat SMA.
“The first appointment that we had, we talked about patients that have SMA who either do or don’t get treatment and what those outcomes look like and Eve said it best, that he wouldn’t see his second birthday if he hadn’t had it,” said Noelle Buso, a social worker at Akron Children’s Hospital who is the coordinator for their neuromuscular program.
“This (gene therapy) has given them a whole new set of opportunities that he wouldn’t have otherwise,” said Buso.
The gene therapy was administered as a single $3 million dose, which insurance agreed to cover. Since then, however, one thing seemed to follow another.
“His first hospitalization was in April when Marshall was given a nasogastric tube because he wasn’t putting on the weight they wanted him to have” said Freeman.
In September, he was hospitalized with a collapsed lung and in November, on Black Friday, he returned to the hospital with rhino enterovirus.
Marshall has been in the hospital ever since. On Tuesday, however, he was finally well enough to go home.
“I’m getting emotional… Marshall has been here for almost four months,” said Sophia Campos, a registered nurse who has become close with Marshall and his family. “You build such close relationships with the families, you know what I mean? And we’re like, I see some of these people more than see my own family sometimes.”
Part of the challenge for sending Marshall home has been getting home nursing care to help.
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Buso says that is a challenge across Ohio, where home nursing providers are in short supply.
On Tuesday, many of those who have been involved in Marshall’s care lined the hallway of his unit on the hospital’s seventh floor to give him an emotional “clap out.”
“I’m so happy that they are going home and they can start to have a normal life with their little toddler,” said Buso.
“Building bonds with these patients is such bitter sweet because I’m so excited that they get to go home and they completed their therapy and their training, but at the same time, I just love these kids so much,” said Campos.
Marshall and his mother were the recipients of joyful hugs.
“It’s definitely going to be a change of pace, but I’m so excited to go home,” said Freeman. “It’s finally time to go home.”
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