Now in its fourth year, the nonprofit Jordyn Demont Epilepsy Foundation helps northern, central and eastern Maine children with epilepsy attend summer camp, as well as provide for specific medical needs.
Based in Old Town, the organization was founded and named for Jordyn, who turned 13 this week.
Diagnosed with epilepsy at age 4, according to a previous Bangor Daily News story, Jordyn came out of her self-imposed shell after attending Camp Wee-Kan-Tu in Duxbury, Mass., which is supported by the Epilepsy Foundation Massachusetts, Rhode Island, New Hampshire & Maine.
“We started it [the foundation] because there is really nothing in Maine for kids with epilepsy,” Jordyn’s mother, Nicole Demont said of the weeklong summer camp program.
When the family first learned about Camp Wee-Kan-Tu and Jordyn finally attended, “it made an amazing difference in her,” and the family decided other youngsters with epilepsy should have the same opportunity.
“A lot of kids would benefit from being with other kids like themselves,” Nicole said.
Thanks to camp, Jordyn has been able to put aside “the stigma of epilepsy and how kids look at that person as different,” Nicole said.
Jordyn is a high honors student, a three-sport athlete who participates in summer sports programs and an active community volunteer.
This year, the foundation will send 8-year-old Jaron Baude to camp and Jordyn will attend, as well.
And while scholarships are available for children to reduce the $1,400 cost to about $500, there is the second consideration of supporting parents who must be in the area while their children attend camp.
Nicole said she has made good connections with owners of motels that give her reasonable rates, but the foundation still must raise approximately $2,000 per family to cover all costs.
“We have sponsored a child all three years thus far,” Nicole said, with the sponsorship including money for meal vouchers, transportation and lodging for parents or caregivers.
“The thing is, it’s so expensive because we live such a distance from the camp, and because of the medical risk you have to stay down there. You can’t just drop them off and leave them,” Nicole explained.
Nicole said she hopes people will consider donating to a program that specifically serves the needs of children north of Portland, adding that programs for youngsters with epilepsy in our area are few and far between.
Whatever money the foundation raises goes first to help send a child to camp and support the child’s family.
Any amount raised above and beyond that is used to help families in other ways.
“We often give people gas cards to help them get to their appointments,” Nicole said.
“We’ve given people gift certificates for medication, and we’re looking into a pet therapy dog for a little boy in Presque Isle.
“So we’re busy all the time, but right now, we’re trying to raise money to cover camp, which, because of the economy, had to cut back to four days, which is very sad.”
The family is working to get the word out about the importance of the camp and how it helps children and families deal with epilepsy on a day-to-day basis.
But in the meantime, Jordyn hopes you will help the foundation send a child to camp.
If you have questions about the camp or the foundation, call Nicole at 356-6135.
Donations may be made to the Jordyn Demont Epilepsy Fund, Penobscot County Federal Credit Union, 191 Main St., Old Town 04468.
More information about the camp can be found at www.campweekantu.org/.