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. That quest has led them in the right direction.
In 2005, together with the Ziegler family, the Eatons founded the MHE Research Foundation – a non-profit organization which hosts “Funtasia,” a bi-annual fundraiser focused on finding a cure and honoring those doctors and researchers working towards it.
To date, MHE – a diagnosis in which dozens of tumors develop on a child’s bones, causing severe pain, limitation of movement, shortening of the limbs and other complications – can only be remedied by surgery to remove the tumors and try and lessen pain.
Vincent, now 22, has had over 35 surgeries to remove over 50 tumors – some of them the size of a baseball – on top of bone cancer at the age of 15. He was diagnosed with MHE at just seven months old.
And so, on Sunday, September 17, the Eaton family hosted its seventh annual “Funtasia,” an evening of recognition and celebration that Vincent’s mother Susan lauded as the “best one yet.”
At the event, held at the El Caribe, 5945 Strickland Avenue, Susan and her husband, Craig, announced that, after 12 years of hard work, fundraising and continued research, the MHE Foundation – together with researchers and Clementia Pharmaceuticals – are in the beginning stages of a drug trial for Paloveretene, which they hope will result in a better treatment that could potentially represent a cure.
“This is truly a major step and very promising for future generations of children whose families have MHE,” said Susan, thanking all of those who have supported the foundation, and Funtasia specifically, for being a part of the “magic” and the “cure.” “It is our hope and joy for children with MHE to lead a better quality of life and enjoy their childhood. It is only through the support of our wonderful family and friends that believe in us and support our mission.”
With this new adventure afoot and another successful fundraiser under their belts, the Eatons are full of excitement.
“The clinical research being conducted is a dream come true for me and others suffering with MHE,” said Vincent, who, by sharing his story, has created a legacy for what his father calls an “orphan disease.”
“Our foundation is a grassroots organization and MHE is an ‘orphan disease’ due to lack of knowledge of it among the general public,” Craig said. “There are no national spokesmen, actors, actresses or sports celebrities aiding us to find a cure.”
The MHE Foundation’s success (and this exciting first step towards long-term treatment), Susan stressed, is just the beginning for Vincent – and countless others.
“When Vincent was diagnosed 22 years ago, we felt like he was the only one with MHE,” Susan said. “Thanks to social media, people with MHE today are able to connect, help each other and share their stories through Facebook and other websites.”
When it comes to her family’s story, she said, “We are blessed to have the best people in our lives and look forward to the day that we can all stand together and say that MHE is a thing of the past.”
The Eatons have lived in Bay Ridge since 1994.