I’ve been getting asked lately how I feel about college. I’m really excited about the opportunity to go but also nervous about moving away from home. It’s a mixture of emotions I call nerve-cited. I’m sure most people feel the same way, but there’s another thing added on that I have to be nervous about, and that is other people taking care of me.
We are so excited to announce a special virtual event, as Jeff Kinney, the author of the Diary of a Wimpy Kid book series and owner of the Unlikely Bookstore Bookstore will interview Jake Marrazzo about his new book, One Wants to be a Letter and growing up with Duchenne Muscular Dystrophy on Monday, December 14, 2020, at 7:00 pm. Both Jake’s book and Jeff’s Diary of a Wimpy Kid book series are about being different and finding your true self. One Wants to be a Letter has already sold over 800 copies and a portion of the proceeds from the book sales will go to our foundation which helps families with Duchenne Muscular Dystrophy to make their homes accessible. The One Wants To be a Letter book is currently in stock at the Unlikely Bookstore Plainville, MA.
Please visit the registration page on the An Unlikely Story website to register for free for this special virtual event with Jeff Kinney and Jake Marrazzo.
About Jeff Kinney and the Diary of a Wimpy Kid Book Series
In 1998, Jeff Kinney came up with the book idea for Diary of a Wimpy Kid, a story about a middle-school weakling named Greg Heffley. Jeff worked on his book for almost eight years before showing it to a publisher in New York. In 2006, Jeff signed a multi-book deal with publisher Harry N. Abrams, Inc. to turn Diary of a Wimpy Kid into a print series. The first Diary of a Wimpy Kid book was published in 2007 and became an instant bestseller. There are now more than 200 million copies of the series in print worldwide. To date, the online version of Diary of a Wimpy Kid has more than 80 million visits and is typically read by more than 70,000 kids a day. The Diary of a Wimpy Kid series has been a fixture on the USA Today, Wall Street Journal, and Publishers Weekly bestseller lists. The book series has remained on the New York Times bestseller lists since the publication of the first book and the books are currently available in 76 editions in 64 languages.
When we released the One Wants to be a Letter Book a month ago, we had modest hopes for the book sales. However, we are happy to report that we have now sold over 500 copies of the book! This news is so amazing and Jake is blown away by the enthusiastic response.
About the Story
The book is a story about being different and more importantly, feeling different. One is a number whose friends are all letters and he felt different from them. One wanted to be just like his friends. In the end, One finds out that being a Number One was what he was meant to be.
Today, Jake and Sheryl Marrazzo appeared on the Dr. Phil Show along with Dr. Freda Lewis-Hall from Pfizer! Jake shared with Dr. Phil that he doesn’t let Duchenne Muscular Dystrophy slow him down and wants to share his positive message with younger children dealing with their diagnosis. Read more about Jake from the website Get Healthy, Stay Healthy. Here are some shots from the show and watch the clip below.
Jake turned 16 years-old in January and for most kids his age that means heading down the DMV and getting a driver’s permit. Jake will take a different path to get on the road as it is necessary for him to get a specialized vehicle. These vehicles allow the driver to control the steering, accelerator and braking via joysticks. These vehicles are very expensive, well over $100,000 each.
Below is a video of our friend Patrick who lives in Maine. He drives one of these specialized types of vehicles that Jake will need to be able to hit the road. We can’t wait until Jake is driving himself, but we can’t do it without your help. We have begun the campaign to raise money to get a specialized vehicle for Jake. Our next event is the Millennium 5K 4 Jake’s Sake (6th Annual) coming up on Sunday, May 19th and we are looking for adults and kids to sign up as a runner, a walker, a virtual participant, a sponsor and a volunteer.
Jake Marrazzo has become a remarkable 16-year-old sophomore at Hudson High School. Jake has not let Duchenne Muscular Dystrophy keep him from pursuing his dreams of performing on Broadway, driving a car and helping to cure his disease.
Recently, he was chosen to be featured as one of WCVB Channel 5 Boston’s A+ Students. Antoinette Antonio came to Hudson High School to interview Jake. Please watch the interview with Jake below which was broadcasted on Wednesday, April 10, 2019.
Sheryl, John and Jake shared their story with other Duchenne parents and kids at the CureDuchenne’s Futures conference, held November 3–4, 2018 in Needham, Massachusetts. Jake, now 15, was diagnosed with Duchenne in January 2011, just before his eighth birthday.
“We couldn’t move Jake, so we had chair lifts installed, which insurance didn’t cover,” Sheryl Marrazzo said. “We wanted to put in an elevator, which is very expensive. We’re talking $40,000 or $50,000, and we didn’t have that kind of money in the bank. So we had to tell our story.”
Marrazzo started their own foundation and soon began talking with reporters with local newspapers and TV stations. Read more
Jake’s Dad, John, competed with two other Dads on the Dudes Against Duchenne Team at the Buzzards Bay Triathlon on September 16, 2018. It is a beautiful course right along the ocean in Westport, MA on Buzzards Bay.
The race started with a two mile run with Jake being pushed by John in our Hoyt Chair. Then followed by a fourteen mile bike ride, which included a few hills hills which is a challenge pulling a 112 pound kid and a 30 pound chair! The final leg was a 5K run which John crushed — he was pushing Jake while dealing with a broken handle bar on the Hoyt Chair that we had to take off in the transition area. It was so inspiring that so many of the other participants in the race shouted out words of encouragement to Jake and John during the run. The crowd at the end cheered them through the finish line!
Jake was asked to be a guest speaker talking to first-year medical students at the University of Massachusetts Medical School (UMMS) on September 12, 2018. He spoke to them about what he thinks makes a doctor world-famous. Jake had them laughing which the students told him was the highlight of their day. One of the student commented on social media, “My classmates and I loved meeting you! Thanks again for sharing your story with us.” Jake shared the good and the bad about being a patient with Duchenne MD, including how he does in school and living his life on a daily basis. We had a great time and were honored to speak to these young people. Good Luck, future doctors!
HOPKINTON — Just before 8 a.m. Sunday, Sheryl Marrazzo crouches down and places both her hands squarely on the sides of her son’s face and leans in close until both their foreheads touch. just a few short minutes, Marrazzo will be competing in the annual Title 9 women’s sprint triathlon, which she’s done for the last five years. But this time will be different – her son Jake, who was diagnosed with Duchenne Muscular Dystrophy at age 7, will be right behind her the whole time.
After 25 weeks of intense training, Marrazzo pulled 15-year-old Jake for the duration of the race’s swimming, biking and running courses using both an inflatable raft and a special $5,000 running chair.
Continue reading the article “Mother, son complete Title 9 triathlon through Hopkinton” at Wicked Local and written by Cesareo Contreras and please click here to watch our photo and video montage from the Title 9 Triathlon race.
Blog and News Posts
- College Bound
- Virtual Event with Jeff Kinney and Jake Marrazzo on December 14
- One Wants to be a Letter Book Has Sold 500 Copies!
- Jake on the Dr. Phil Show!
- Driving with Duchenne Muscular Dystrophy
- Jake Marrazzo Chosen as WCVB Channel 5 Boston A+ Student
- Parents Swap Stories at the CureDuchenne ‘Futures’ Conference
- Father & Son with Duchenne complete Buzzards Bay Triathlon
- Jake Talks to 1st Year Medical Students at UMass Medical
- Hudson Mother & Son Complete Title 9 Triathlon in Hopkinton
- I Just Want to Show Other Patients that Anything is Possible
- Hudson Woman Will Compete in a Triathlon with Her Son Who Has Duchenne Muscular Dystrophy
The 4 Jake’s Sake Charitable Foundation helps families who have children with Duchenne Muscular Dystrophy.
4 Jake’s Sake Charitable Foundation
P.O. Box 238
Hudson, MA 01749