Hi guys! My name is Adrian. I am a 8 year old from Massachusetts and I have a rare form of Muscular Dystrophy called Spinal Muscular Atrophy Type 2.

Unfortunately all of the best treatments and equipments are not covered by insurance. My insurance only allows me 30 physical therapy and occupational therapy visits a year so my parents pay out of pocket $250 per week for these therapies at the NAPA Center (also known as the best of the best) when I exhaust my covered visits. I would love to start going to physical and occupational therapy twice a week because it helps me so much.

I have surgery 3 times a year where I receive the medicine that prevents my disease from progressing and actually allows me to regain strength that I’ve lost. The copay for that surgery is $500 but that doesn’t seem like that much when the medicine I receive in this surgery costs $125,000 for a 5mL vial.

Since August 2019 I have been lucky enough to be a patient in a clinical trial for a medication produced by Scholar Rock. Every 20 – 30 days I travel to Boston Children’s Hospital for an IV infusion of the experimental medicine. I feel so fortunate to be part of this trial because the medicine is really helping me gain strength. I even started using a walker at physical therapy!

I am so happy that my parents found Help Hope Live because it allows me to have super awesome events like my upcoming Halloween 5k and to earn funds so that I can get more equipment and therapies that will help me be the strongest boy I can be!

Thank you all for your support!