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Living with Dravet syndrome will be a lifelong challenge for Pasadena family

The Pink family of Pasadena (from left) James, Jim, Jackson and Jeanette have had to adapt to a new reality since four-year-old Jackson’s diagnosis with Dravet syndrome.
The Pink family of Pasadena (from left) James, Jim, Jackson and Jeanette have had to adapt to a new reality since four-year-old Jackson’s diagnosis with Dravet syndrome.

Jeanette and Jim Pink have good jobs that should allow them to take family excursions to wherever they’d like to go.

But what they cannot afford is to be too far away from a hospital if their son Jackson is with them.

The Pink’s have two sons. Their youngest, Jackson, 4, has a rare genetic disorder called Dravet syndrome that makes him susceptible to serious seizures.

A rare form of epilepsy, Dravet syndrome accounts for only one per cent of the people who have epilepsy. As far as they know, Jackson is the only person in western Newfoundland with Dravet syndrome.

Jackson suffered his first seizure in June 2014 at the age of one while he and his mom were enjoying a day at Pasadena Beach. Until that point, his development had been otherwise healthy and normal.

It wasn’t until he was three and suffered more prolonged seizures — including some that lasted hours — that the Pinks realized something more sinister was at play. When one lengthy seizure resulted in Jackson being airlifted to the Janeway Children’s Hospital in St. John’s, subsequent testing allowed doctors to make the diagnosis of Dravet syndrome.

“This has changed our whole life,” said Jeannette.

Jackson’s body cannot regulate its temperature, so he is prone to seizures if he gets a fever or if the weather gets too warm. He can’t even take a warm bath and his exposure to other kids has to be carefully monitored so he doesn’t contract a common cold.

“If we see him sniffle, then mom is off work for five days,” said Jeanette. “This has become our normal.”

Their older son James, 13, witnessed his brother ‘s first seizure and has seen plenty more of them since. The Pinks have developed a contingency plan to have him cared for by others whenever a seizure starts so his exposure to these scary episodes is limited.

Finding the right mix of medications to help Jackson has involved a lot of trial and error, but the Pinks think they may have finally found the right combination. Jackson has only had two seizures in the last year thanks to the cocktail of medications he takes. In the two years prior, he had 60 seizures.

No one can really tell the Pinks what the future holds for Jackson, but now that things seem to be more under control, they have planned a community walk around Pasadena to raise awareness of Dravet syndrome on Sept. 30.

“Life for us may get rough again, but while it’s good, I feel I’m ready to do something about this with my time and energy,” said Jeanette.

They had set a goal of raising $1,000 for Dravet Canada, the national organization established to assist families living with the syndrome, but the Pinks have already raised more than $1,700 through friends, family and co-workers.

They hope this year’s walk can grow into a bigger event in the coming years.

The three-kilometre walk will commence from the Pasadena Fire Department building at 10 a.m. and will be followed by a family fun barbecue at the station. Anyone who would like to participate is more than welcome to do so.

www.dravet.ca

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