Thursday March 23, 2017
An outgoing personality, boundless creativity, and a warm heart seem to be ideal ingredients for a goodwill ambassador. Add to that a great sense of humor and an indomitable spirit and you have just described Cooper, recently named Muscular Dystrophy Association (MDA) Vermont and New York State Goodwill Ambassador for 2017. At seven years old, it is incredible to note this is not Cooper’s first time at bat being a representative for MDA, a non-profit organization dedicated to curing muscular dystrophy, ALS, and related diseases. He served in this role in 2016 and this year shares the honor with Tandin, a doctoral student at the University of Vermont. According to Cooper’s mother, Heather Grimes, “Cooper is extremely humble about being selected as the ambassador for the second year in a row. He is just honored to help be the voice for so many.”
The MDA State Ambassador program helps put a face on MDA’s mission by calling upon individuals affected by muscle-debilitating diseases to share their personal stories and inspiring support of MDA.
Cooper was diagnosed at the age of four with Limb Girdle Muscular Dystrophy, a group of disorders that can affect voluntary muscles. Grimes says that the disease has a long genetic history on Cooper’s maternal side of the family, but the severity varies from person to person.
Public appearances at different MDA fundraising events are part of the goodwill ambassador’s job and it is with the help of those funds that progress is being made in MDA research. “There’s now three new drugs that can help slow the progression of specific types of MD,” says Grimes, adding, “As Cooper’s parents we have high hopes that before too long scientists will come up with another drug to help with Cooper’s specific type of MD.”
The seven-year-old is now a seasoned veteran of different fundraisers including the Lock Up in Burlington and in Lake George, Superhero 5K at Oakledge, Fill the Boot in Burlington and St. Johnsbury, and more. Grimes says, “While attending these events, Cooper is able to thank people for their donations on behalf of him and all the others living with MD. He also gets the chance to meet others with the same or similar challenges.”
Cooper is just the type of outgoing guy other people want to meet. According to the MDA New York office, he is known for his energy and enthusiasm, which they say are matched by his empathy and compassion towards others. A student at Chamberlin School, his favorite subject is art, and as Grimes reports, “Anything where he gets a chance to socialize with his friends!”
Other interests of the young ambassador include playing guitar and traveling to forts to learn about different battles that took place in New England. In his free time, when not attending an MDA Care Center visit at The University of Vermont Medical Center or attending school, Cooper likes to immerse himself in the video game world of Minecraft. Although he need not look to video games or movies for inspiration. Grimes states, “Cooper’s father is definitely his number one superhero!”
One can easily see how proud Cooper’s parents are of their son. “We are just so honored to be Cooper’s parents. Every single day we’re beyond thankful to be blessed.” They say that their son’s diagnosis has given their family a greater sense of empathy and compassion for others. Grimes adds, “Not judging a book by its cover is a lesson you learn at a very young age when you or a loved one has MD or any mental or physical aliment.”
And, indeed, it does take a village. Cooper’s parents, Heather Grimes and Derick Papin, note that both the MDA and the University of Vermont Children’s Hospital are their biggest support. In addition, Grimes says that Cooper’s school has been very helpful in accommodating his needs. She adds, “We also have an extremely supportive family and great friends that are all willing to help when needed.”
When asked, Grimes acknowledges the challenges their family meets on a daily basis. “When you have MD, every little thing you do is calculated in your head. When you’re going somewhere, you’re thinking about if there is going to be stairs, will I be able to get up from the chair, is it a long walk from parking, what if I fall. The list goes on. I imagine everyone to some degree thinks about what they’re about to do, but the small little things that people don’t think about are usually the ones that matter most to someone living with MD and can certainly give a great deal of anxiety.”
At home, Cooper, an only child, would like to expand his family to include a dog. Currently besides his parents, he resides with Macaula, their family cat, but Grimes admits, “Cooper has wanted a puppy since he could talk. Now that he’s getting older, we hope to add to our family by rescuing a dog this spring.”
Cooper, as MDA ambassador, joins an elite group who have walked his path. According to the New York MDA office, former ambassadors have grown up to fulfill life goals and achieve distinction, earning advanced degrees and making their marks as successful professionals. Many continue in volunteer roles for MDA, serving on various committees on public awareness and appearing at events to tell MDA’s story of progress.
Meanwhile, as the year progresses and Cooper continues to make public appearances as an MDA ambassador, one can see he leaves a trail of goodwill in his wake. An inspiration to others as well as a delightful person to know, he is a seven-year-old with a mission. As Grimes says, noting her son’s beautiful smile, “He’s really taught us a lot about life and what really matters.”
For more information, visit mda.org.