The Eaton family’s quest for solace has inspired a worldwide community for those dealing with Multiple Hereditary Exostoses (MHE), a rare genetic bone disease that their son Vincent was born with.
In 2005 they founded The MHE Research Foundation which hosts “Funtasia,” a bi-annual fundraiser focused on finding a cure and honoring those doctors and researchers working towards the cure.
“Hearing the words that your son has a RARE bone disease, was horrifying,” said Susan Eaton, Director of Fundraising and Family Advocate for the MHE Research Foundation, on her son Vincent’s diagnosis nearly 21 years ago. “It was so frustrating to know that your son has something so rare and to feel like you’re alone in something so devastating.”
The mother of three recalls a time without today’s technology and scarce research when her son, now almost 21, was diagnosed at only seven months old.
“I tried to do research but there was nothing to be found,” she explained of her five-year search for answers. “I was limited to what the doctors told me.”
Finally, she found support in the creation of the MHE Research Foundation.
“To me, having someone to find information from and someone to talk to is very important because we didn’t have that when he was diagnosed,” she said, noting the foundation’s importance to families across the globe.
Today, Vincent has undergone over 32 surgeries and a chondrosarcoma (bone cancer) all by the age of 20. He is making his mark at Villanova University in northwest Philadelphia where he studies pre-med. The college senior hopes to one day treat patients facing the same struggle and help make their lives better.
Above all, Vincent is leaving his mark on the foundation where he’s created a legacy. According to Eaton, her son began his own campaign designing bracelets sold online at $5 each to support the cause.
“It [the foundation] helps him on a different level where he knows he contributed to the cause,” said his mother, “and it makes him feel good that he’s participating so much.”
“Awareness is an amazing thing,” she said, still amazed at the design’s global reach. “I have families in Peru and Australia placing orders and reaching out with their stories of MHE. Ultimately, it’s about the support and being able to help in any way.
“That’s what it’s all about, that and networking,” said Eaton. “It’s helping people get through the hard times and knowing that you are not alone. It’s everyone coming together and above everything else, we need to support our researchers that are working tirelessly to find a cure. Our hope is to be able to tell these families that “Hey!!! We have a cure!…No more surgery!…” at the end of the day, we want to give that news to all the people that suffer with MHE”.
The Eaton family and the MHE Research Foundation are coming together once again to host their 6th Bi- annual Funtasia Research Banquet, an evening of awards, citations, dinner and dancing for an audience with a common goal. All proceeds from Funtasia 2015 Research Banquet will go towards supporting the researchers’ and the Medical Orthopedic Conferences that help further their work.
“At the end of the day, raising money to support the researchers is one step to the bigger picture,” said Eaton. “Everyone thinks ‘there’s gotta be an easier way,’ and we’re just trying to make it down that road. It’s all in the works.”
The Research Banquet is for a good cause and something the entire Eaton family participates in with extended efforts and continued support from their family, friends and the Bay Ridge community.
“We can only keep trying,” said Eaton on her family’s continued advocacy within the community. “It is our plan to put an end to MHE.” Children should enjoy their childhood….not spend weeks & months out of each year at doctor appointments, MRI’s, surgery, recovery…..then weeks of physical therapy! We are so grateful for all of those who support us & believe in our work! God Bless Them All.
Funtasia 2013 will take place Sunday, September 13 at El Caribe Country Club (5945 Strickland Avenue) from noon to 4:30 p.m. For more information or to make a reservation, contact Susan Eaton at email@example.com or call 917-848-7774.