SWANSEA, Mass (WPRI) – A local family is helping to raise awareness about a rare genetic disease affecting two of their loved ones.
Jordan and Zachary St. Gelais both suffer from Batten Disease, an extremely rare, genetic brain disorder that has no cure.
There are only 300-400 known cases of Batten Disease in the U.S., and only about 1,000 in the world.
Jordan and Zachary were diagnosed at just eight and 12 years old, their parents say that in 2012, they each had seizures, so doctors first believed they had epilepsy.
It took over ten years and a team of doctors to finally give the boys a concrete diagnosis, Batten Disease.
All patients are missing a portion of a gene, which causes them to slowly lose their abilities, because their brains can no longer tell other parts of the body how to function.
The progression of the disease is different with every child.
Now 24 and 27 years old, the St. Gelais brothers are both blind, have seizures, and can no longer walk.
Eventually, they’ll lose their ability to eat, swallow, etc.
On Saturday night, their father and stepmother, Moe and Jean St. Gelais of Westport, hosted the 5th Annual Batten Disease Research Winter Dinner Show at the Venus de Milo in Swansea.
They say their hope is to raise awareness.
The event featured a dinner, dancing, and a show by a hypnotist.
The family has raised over $369,000 dollars in the past seven years, money goes directly to Massachusetts General Hospital. Doctors at Mass General diagnosed the brothers in 2012.
Knowing their sons’ days are numbered, the family does not take a single day for granted.
Moe says, “We just live every day. It’s really what it is. Every smile that we get out of them is just good.”
“We wouldn’t wish this disease on anybody.” says Jean. “We’re going to lose them at some point, but we’re never going to stop doing fundraising and what we’re doing, until there’s a cure found.”
Along with the annual winter dinner, the St. Gelais’ also host a fundraising golf tournament in August.
If you’d like to donate, you can visit battendiseaseresearch.com.