Hi guys! My name is Adrian. I am a 9 year old from Massachusetts and I have a rare form of Muscular Dystrophy called Spinal Muscular Atrophy Type 2.
I was born 5 weeks early but like the true fighter that I am was lucky enough to hit all of my milestones on time until it came to taking independent steps. That’s when things started to change. I ended up losing the strengths and abilities that I had developed and by the age of 18 months I was losing the ability to cruise furniture, to stand, to crawl, to roll over and even to sit up. After many doctors appointments throughout Western Mass I was diagnosed by the angels in the Neuromuscular Department at Boston Children’s Hospital. Since the March 2017 diagnosis I have been traveling to Boston (a 1.5 hour drive each way) regularly for therapies, treatments and appointments 1 – 5 times a week.
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!
