MJ’s Story – Spinal Muscular Atrophy

​​​​​MJ Hoodjer is spunky, vocal and a good sleeper for his parents, John and Amanda. While enjoying life as a new family of four, the Hoodjers received a life-changing phone call following his newborn screening.

“MJ was diagnosed with spinal muscular atrophy, a disease that tends to affect the cells that are in charge of strength and movement in general," said Boys Town Pediatric Neurologist Matias Lopez Chacon, M.D. “Over time, these patients will become very weak. It's a very severe, debilitating disease."

“We had no idea what it was," said John, MJ's father. “It was pretty terrifying. We just started googling it, finding out what it was and what it meant."

Their search led them to the Boys Town Pediatric Muscle and Weakness Clinic, led by Dr. Lopez Chacon.

Thankfully, MJ wasn't yet exhibiting any symptoms, but Dr. Lopez Chacon knew it was crucial to start gene therapy infusions right away at Boys Town National Research Hospital. MJ's long-term prognosis, so far, is excellent.

“I expect MJ to ​do great things," said Dr. Lopez Chacon. Learn more about MJ's story below!​​

• Transcript

  He's a great baby. He's very vocal. He's spunky, sleeps really well.

  When he came into the picture, it was like, 'Alright, one of each, life's perfect now.'

  Life couldn't get any better honestly. And when he came into the world, I just felt our family was complete in that moment. And I think that's why the phone call, when we found out he had SMA, was just so life changing because it felt like our family was going to fall apart.

  MJ had been diagnosed through the newborn screening as spinal muscular atrophy, which we had no idea what that was. It's pretty terrifying as you start Google searching it and figure what it is and what is means.

  MJ was diagnosed with spinal muscular atrophy, which is a disease that tends to affect the cells that are in charge of strength and movement in general. So over time, these patients would become very, very weak. So it is a very severe and debilitating disease.

  When we went to Boys Town, I was sobbing, and going in, Dr. Lopez was so warm and really just went step by step of what SMA was. He went through all the treatments.

  We're going to cover every possible angle that we can.

  Dr. Lopez is a world-class physician, neurologist, but more importantly he's a world-class person because he connects with you on an individual level.

  We're gong to get his vitals afterwards as well.

  When we went in for the infusion, just feeling at ease, comfortable.

  The gene therapy that we have applied on MJ, essentially what it's trying to do is trying to get that gene that is missing back into the system. Essentially, it's curing the disease before it presents symptoms, and that's why it's important to get it so early.

  Should we do some tummy time?

  Now he can just grow up as normal kid and progress into adulthood without any potential issues because he's had the treatment.

  Now, I would not expect him to ever have symptoms. I would expect that his long-term prognosis is very, very good. I expect MJ to do great things.

  We're just very, very grateful, thankful (look at you standing) that we have the prognosis that we do. That the treatment is working, he's doing great and he's moving forward. (Can you do planks?) Definitely been very thankful for Boys Town for what they do and how they approach healthcare.​