I Just Want to Show Other Patients that Anything is Possible

September 7th is World Duchenne Awareness Day, which aims to raise awareness for people living with Duchenne muscular dystrophy (DMD). In this blog, Jake Marrazzo, a DMD patient and advocate, shares his experience, providing a powerful story of inspiration to anyone who has been touched by this disease and was originally published by America’s Biopharmaceutical Companies on September 7, 2018.

My story starts on a basketball court in early elementary school where, despite my best attempts, I couldn’t seem to keep up with the other kids. I also noticed they had an easier time going up the stairs, and I really wanted to know why. After a few years of asking questions, at age 8, I was diagnosed with Duchenne muscular dystrophy, or DMD for short

Essentially, this genetic disease means that my body can’t make a protein called dystrophin, which my muscles need to keep moving. Without it, my muscle cells have started to weaken and die off. At age 12, I started using a wheelchair because walking became too difficult.

I’m 15 now, but in the seven years that have passed since my diagnosis, I have refused to let this disease slow me down. Getting diagnosed with DMD was extremely hard (although I think it was harder for my parents than it was for me), and I was forced to come to terms with certain limitations at a far earlier age than most people.

But at the same time, I’ve learned the value of living life to its fullest in the time that we have. I feel like I’ve discovered myself as a person, and ultimately, I’ve been able to become an inspiration to others.

Please visit America’s Biopharmaceutical Companies to read the rest of this article.

Hudson Woman Will Compete in a Triathlon with Her Son Who Has Duchenne Muscular Dystrophy

PRESS RELEASE

September 9, 2018 – Hudson, MA – Hudson resident Sheryl Marrazzo will be competing in the Title 9 Sprint Triathlon in Hopkinton, MA on September 9, 2018 with her 15 year old son Jake, who has Duchenne Muscular Dystrophy and has been confined to a wheelchair since age 12. Sheryl will compete in the triathlon by pulling Jake in a raft for a 1/4 mile swim, then pulling him in a Team Hoyt custom-design race chair for a 10 mile bike ride and finally pushing him for 3.1 miles in the race chair.

The inspiration for this challenge is when Jake has repeatedly told Sheryl, “I am frustrated on the sideline waiting for you to finish your Triathlons. Can you take me with you this year?” Sheryl agreed and began a 25-week training regimen with Unified Health & Performance owner Brendan Alward. So for the last 168 days or so, each day has been filled with swimming, running, biking and strength training for this 52 year old mother of three.

Sheryl says, “I swim, bike and run for Jake and all those who can’t. We started a foundation called 4 Jake’s Sake to help families trying to cope with Duchenne Muscular Dystrophy. Jake is my constant source of inspiration to raise awareness and funds for this disease without a cure. When we train, Jake always asks me when are we going to go faster?”

Duchenne Muscular Dystrophy is a progressive muscle disorder that causes loss of muscle function and independence. It is the most common fatal genetic disorder diagnosed during childhood. Boys with Duchenne first lose their ability to walk, then their ability to use their arms and carry out everyday activities. As they grow into young men, Duchenne boys typically succumb to the disease by their early 20s due to respiratory problems or heart failure.

Sheryl joins the 80 other Gals for Cal team for the 5th year at the Title 9 Sprint Triathlon, raising money for the “Living Large” fund. This helps families living with Duchenne to get the things they need to live an accessible life. To support Sheryl & Jake with their efforts, visit the 4 Jake’s Sake Foundation and visit the Gals for Cal team to learn more about this great organization.

First Day Using Our New Team Hoyt Running Chair

Yesterday was our first official 5k with our new Team Hoyt Running Chair! It was hot and crowded, but we managed a personal best and beat our last run by 2 minutes!! Jake kept asking me when I was going to go faster!! Did the best I could kid…speed in progress!!! People kept saying I don’t know how you do it (pushing a 35 pound chair and a 110 pound kid) but I know how…I do it 4 Jake & Tyler’s Sake!!

 

 

Hudson mother, son raising money for specialized running chair

HUDSON — During a run along the rail trail earlier this spring, Jake Marrazzo spurred his mother on as she started training for an upcoming triathlon.

“Faster,” he said as she pushed him in a mobility stroller. “I want to feel the wind in my hair.”

As a casual jogger, Sheryl Marrazzo had a quick answer for her 15-year-old son.

“I’m going as fast as I can,” she said.

Jake, a freshman at Hudson High School, has been unable to walk since April 2015 after being diagnosed with Duchenne Muscular Dystrophy in January 2011 — a few days before his 8th birthday. The disease is a genetic disorder characterized by progressive muscle degeneration and weakness, according to the Muscular Dystrophy Association.

visit the to read the rest of this article.

Hudson Teacher Helps Student Making Tough Transition

This article was written by Paul Burton and published on WBZ-TV on November 6, 2015 at 6:14 pm.

BOSTON (CBS) – Jake Marrazzo, 12, is learning a lot of hard lessons about life but his approach to it is inspiring those around him, especially his substitute teacher Melissa Ansley. “I can’t walk anymore. I originally could when I was little,” Jake said. Jake suffers from Duchenne Muscular Dystrophy. “Every morning he would say ‘good morning’ with this big smile and I thought if someone like that can be happy every day what do we have to complain about,” Ansley said. Jake’s mother Sheryl Marrazzo says her son is a fighter. “It’s like ALS but in children,” she says. “If you can imagine watching someone you love with all your heart struggle it’s hard wrenching.”

Visit WBZ-TV to read the rest of this article.