Jake, a spirited 11-year-old who loves video games, social studies, and watching videos on YouTube, was diagnosed with Duchenne Muscular Dystrophy at age 7. Since then, Jake’s friends and family launched 4 Jake’s Sake to raise funds and awareness for Jake’s condition. The project’s launch has raised over $12,500 for a home elevator so Jake can safely get around his home in his wheelchair!
Below, Jake’s mom Sheryl answers some questions that 101 Mobility had about Jake and his journey.
What is the specific name of the disease that Jake was diagnosed with? Can you tell me about it?
Jake has Duchenne Muscular Dystrophy (DMD). Jake, now 11, was diagnosed with DMD a few days before his 8th birthday. DMD is a progressive muscle-wasting disease, which affects all muscles in the body, including the heart and lungs. It attacks the muscles taking away the ability to run, jump, walk and eventually hug. It’s like ALS, except in kids. To date, there is no cure, and it’s 100% fatal.
Why did you create 4 Jake’s Sake? What is your ultimate goal with this campaign?
Jake’s diagnosis was very tough to deal with, and after many souls searching, we decided to do something! Jake’s family and friends created a fundraising organization and named it 4 Jake’s Sake. The 4 Jake’s Sake mission is to help with Jake’s medical expenses, home modifications, and research to find a cure! Currently, we are raising funds to install an elevator in Jake’s home so he can reach all the floors in his wheelchair, also known as “Panther.” After the elevator, we plan to go full throttle into raising funds to find a cure.
Were you surprised at the recognition your campaign received within and beyond your community?
We have done several fundraisers since Jake’s diagnosis and we have been blessed with such an outpouring from friends, family, our community, and even strangers. 4 Jake’s Sake has a website (https://4jakessake.com/) and a Facebook page (https://www.facebook.com/4jakessake), so we connect with people from all over. It’s so awesome to see the kind of support we are getting all over the world!
How do you think this will impact others diagnosed with muscular dystrophy?
We hope that Jake can be an inspiration to others, as he really is determined to stay on his feet as long as possible. Despite everything, he is a really happy kid.
What kinds of things have you already done to spread awareness about 4 Jake’s Sake?
Our first effort was with the MDA for the Muscle walk. We had 80 walkers and raised over 20k! We continue to walk for the MDA but have also done things with Parent Project MD and the Jett Foundation. They do things for just DMD. Jake’s father and I have run races and triathlons, all to raise awareness—we will swim, walk, run, and bike because Jake can’t.
Are there any upcoming events you can tell me about?
Plans are in the works for a “Lift Off Gala” to help us raise funds for an elevator. You really don’t understand the financial burden of special needs until you are there… purchasing a minivan with an accessibility ramp, a wheelchair, and now they need for an elevator. It’s a huge financial drain on a family. We are thankful for all of the support we’ve received.
We also have a Millennium 5K and Padawan Fun Run coming up on May 17, 2015. This is our second annual race and we hope to make it a big party this year!!
When asked what kind of message Jake would like to leave for his readers, he simply said, “Hi” and to “just be yourself.”
Learn more about muscular dystrophy by visiting: https://mda.org/
Learn more about Duchenne muscular dystrophy by visiting: https://mda.org/disease/duchenne-muscular-dystrophy
Help Jake and his family by visiting: https://4jakessake.com/
