Fort Erie couple looking for community support to raise funds for service dog

A 10-month-old Fort Erie boy and his parents are looking to the local community for help.

Jordyn Robitaille and Kody Lalande are hosting a golf tournament at Fort Erie Golf Club on September 20 to raise money to support their son Miles, who was recently diagnosed with Dravet syndrome, a severe form of epilepsy.

This realization came after multiple late-night trips to the hospital due to the young boy having seizures.

They have purchased a seizure detection service dog for close to $3,000, and also need to come up with another $12,000 to pay for the dog to be trained by an expert in Lincoln, a process that takes about six months, explained Jordyn in an interview at their Fort Erie home this week.

Dravet syndrome is caused by mutations in the SCN1A gene, which encodes a sodium channel critical for proper functioning of the brain, explains the website of the Dravet Foundation, a U.S.-based organization.

It causes patients to experience many challenges, including severe seizures, an increased risk of mortality, and developmental impacts on cognition, movement, and behaviour.

“Current treatment options often involve a combination of antiepileptic medications, but they frequently fall short, prompting the need for more effective therapies,” explains the Dravet Foundation.

Jordyn said Miles has taken medications, some of them more effective than others, but said that gene therapy to compensate for his sodium channel producing only at 50 per cent will hopefully be a key part of treatment.

“That would eliminate symptoms,” she said.

Miles’ dog, when he is fully trained, will be able to detect when he is about to have a seizure.

Jordyn said there are only 300 known cases of Dravet syndrome in Canada.

When Miles was three months old, he had his first seizure. It lasted 45 minutes and resulted in a trip to the hospital, also leading to a week-long stay at McMaster Children’s Hospital in Hamilton.

Tests determined that he didn’t suffer any brain injury, said Jordyn, also explaining that Miles has had multiple seizures in the last few months.

A two-week span was the longest he went without one, and there was one point that he was having 25 to 30 small seizures per day.

In an interview Wednesday, she said it had been nine days since his last one.

“He’s doing pretty well right now,” she said, also noting Miles has lots of support on his side, as well as his older brother, Bodie, who is two years old.

All spots for golfers at the upcoming tournament are full, but financial donations, raffle prizes, and hole sponsors are still welcome.

More than 20 seats for dinner also remain available, she said.

To contribute or get more information, contact (289) 241-2266 or jord.robitaille@gmail.com.

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