Meet the Eaton family. Every since their son Vincent was born with Multiple Hereditary Extoses (MHE), they’ve united as a family to find ways to combat the rare disease.
And it’s looking like they could quite possibly find a cure.
A bit of a run down here: In this rare one, bony spurs and lumps known as exostoses are developed on the bones of a child at an early age. There are other rare diseases similar to MHE as in multiple osteochondromatosis. Some of the symptoms include a limit to movement, a shortening of limbs and could be treated with difficult surgeries.
The Eaton family joined forces with the Ziegler family to found MHE Research Foundation. This charitable non-profit organization is in charge of putting on the bi-annual fundraiser known to many as “Funtasia,” aimed on finding a cure for MHE and praising the good men and women who are working toward it.
It’s been quite a painful ride for Vincent who is only 22 years old and has already undergone 35 surgeries. He’s had over 50 tumors in his body removed, some being as large as an orange. To make matters worse, he was also diagnosed with bone cancer at 15 years old. Life has been rough.
The seventh annual Funtasia, however, was a huge success and it was here where Vincent’s parents, Craig and Susan, made a special announcement: That after years of research and donations, they have finally reached the early stages of drug trials for Paloveretene. This drug hints at positive treatment that could lead to a cure.
“This is truly a major step and very promising for future generations of children whose families have MHE,” said Susan. “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.”
The Eaton’s are hopeful that this is the first step toward major progress for Vincent and others like him. Through social media, they’ve realized that Vincent is not alone. Others like him are able to connect and share their journeys online.