Raising awareness to Batten Disease

(FOX Providence) - Imagine being blessed with 2 healthy young boys, full of life and energy, embracing the joy and adventure of childhood.

Then, all of a sudden, a deadly diagnosis of a disease that has no cure and is so rare less than 20 people in New England have it. Moe St. Gelais had those two healthy young boys, two years apart in age, Zachary and Jordan.

But when they were on the verge of becoming teenagers the boys lives changed, each started having seizures, then came loss of vision and motor skills.

Eventually both boys were diagnosed with Batten Disease, a rare, fatal neuro-degenerative disorder that will eventually end the life of both of Moe’s boys.

In August, Moe and his wife Jean held the 2nd annual Batten Disease Golf Tournament at Allendale Country Club in North Dartmouth Massachusetts.

One hundred percent of the money that has been raised goes to researchers trying to find a cure. Over $35,000 has been raised in the first 2 years. Both of the boys were there and even though they are both now legally blind, they kicked off the event by hitting a ceremonial and very emotional opening tee shot.

This year's event was sold out with a full field of golfers.

On the web: http://www.battendiseaseresearch.com/