Not All Superheroes Wear Capes: Update on Leo
“Sometimes, real superheroes live in the hearts of small children fighting big battles.” -Unknown
Leo, 2017
No truer statement could be said of this little PHS warrior, Leo. Born in 2016, Leo was diagnosed with infantile Pompe Disease, resulting in weakened muscles, lack of mobility, and upper respiratory issues.
The early prognosis was that he would be on long-term trach care, unable to sit up on his own, and would need 24-hour nursing. Fighting from the start, Leo began with respiratory care, enteral feedings, and infusion nursing with PHS right away.
“The support they gave early on and continue to give [has] never faltered.” Leo’s mom, Anne (co-founder of the Pompe Warrior Foundation), stated in an update last week. “My heart breaks for families in other states that don’t have a PHS. They spend a lot of time in the hospital….I don’t have to say it here, but home is best.”
Despite challenges that Pompe disease brings, Leo is thriving at home with PHS. He no longer needs trach care and has been decannulated. He plays floor hockey in his wheelchair at school with the other kids, and he recently graduated from speech therapy!
“We were afraid Leo would never talk [and now] he is a very verbal little boy,” Anne shared. “A lot of parents worry about g-tubes and trachs because it’s scary when you first see it—thinking about trying to come home and do all that on your own. We were blessed that [PHS] could assist us.”
What’s Next for Leo?
Today, Leo is five (going on six) and, like a true superhero, continues his weekly enzyme replacement therapies with PHS.
He loves all-things sports and plays adaptive baseball twice a week with Miracle League (his dad, Denis, coaches). Leo is also signed up to play adaptive golf this summer. “He loves golf,” Anne laughed. “He’s probably the only five-year-old who actively watches golf every Sunday with grandma.”
Leo has big dreams of walking someday and works with a physical therapist and occupational therapist to help him reach his goals. He recently took 33 steps on his own, eliciting cheers from his biggest supporters. With the help of his family, friends, and PHS, Leo grows stronger every day, proving once again that “not all superheros wear capes.”
About Pompe Warrior Foundation
Anne and Denis St. Martin started the Pompe Warrior Foundation to help “promote research, educate, and empower individuals and families affected by Pompe Disease and other rare diseases.”
Because Pompe Disease is a lysosomal storage disease, it causes a buildup of glycogen, making it impossible for Leo’s body to process sugar and carbohydrates. The Pompe Foundation’s focus is to fund medical research that shows the importance of adding diet to the standard treatment protocol for Pompe Disease. So, when families in other states receive a diagnosis, they will get to meet with a dietitian to receive the needed supplementation to help their children grow strong.