SouthCoast Family Honors Two Brothers While Fighting Rare Disease

For most families, a clam boil is a reason to gather around the table, eat well and enjoy each other's company. For the family of Jordan and Zachary St. Gelais, an upcoming event in Westport will mean so much more. It will be a day to honor two brothers whose lives have been shaped by a rare disease many people have never even heard of.

Jordan and Zachary were both diagnosed with Batten disease, a rare genetic disorder that affects the nervous system and can lead to seizures and the gradual loss of eyesight, mobility and cognitive abilities. Zachary began showing symptoms at seven years old, followed by Jordan the next year at age 12. Though the brothers were originally not expected to live beyond their teenage years, both lived well into adulthood, with Zachary sadly passing away in February at 33 and Jordan turning 38 this September.

On Saturday, August 1, their family will bring the community together for the first Brothers With Batten's Clam Boil & Family Fun Day at the Holy Ghost Club on Sodom Road in Westport. The event will honor Jordan, remember Zachary and raise awareness for a disease their sisters say is still unfamiliar to many people.

"There's some doctors, when you say it, they're like, 'Wow, I have to look that up,'" their sister Katelyn St. Gelais said, further proving the rarity of Batten disease.

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Turning Their Brothers' Story Into Help for Other Families

Katelyn and stepsister Kate Carpenter recently helped launch Brothers With Batten's, a nonprofit inspired by Jordan and Zachary and built around helping other families affected by the disease. Their family spent years raising money for research through an annual golf tournament, but the sisters now hope to also help families with the everyday realities that come with Batten disease.

Brothers With Batten's Westport Fundraiser

"We're trying to raise money to help New England families," Kate said. That could mean helping with equipment or accessibility needs that insurance may not cover. The nonprofit also hopes to support a future Batten Center of Excellence in Boston and help siblings attend conferences where they can connect with others who understand what their families are experiencing.

READ MORE: Westport Fair Honors One of Its Own

The sisters are already hoping to help other families in Massachusetts, including children currently living with Batten's disease. For Katelyn and Kate, the mission is personal because they know firsthand how quickly life can change and how important it is to make memories while there is still time to experience them.

A Day to Remember Jordan and Zachary

This event runs from 1 p.m. to 7 p.m.., with the clam boil served from 2 p.m. to 5 p.m. and family activities including a bounce house, face painting, arts and crafts, raffles and music. Behind all the food and fun are two brothers, one family and a hope that more people will leave knowing the name Batten disease, and remembering the names Jordan and Zachary St. Gelais.