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Adrian's 5k Run, Walk & Roll
1 Mile, Other
Sun, Oct 17, 2021
About This Activity
Please join us on Sunday, October 17 at Stanley Park in Westfield for Adrian's 5K Run, Walk & Roll Halloween Extravaganza Event! This is a family event! Not only adults will love this event, but so will the kids! We encourage all to dress in Halloween Spirit, whether a costume or any halloween attire! This is not required, but definitely encouraged! Trick or Treat stations will be along the 5K route for all to enjoy.
This event is Rain or Shine. Registration begins at 9:30AM Race Starts at 10:30 AM Post Race we will have music and snacks available!
$25 for Adult Participants $15 for Participants 12 & under
We will also be having a great raffle after the race including some great sports items from the New England Patriots, Boston Bruins & More!! (Adrian's Papa is Scott Daniels... former NHLer for the Hartford Whalers, Philadelphia Flyers & New Jersey Devils... & Springfield Indians & Falcons!!)
Hi guys! My name is Adrian. I am a 6 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!