Two families united by a challenge—and a cause

Jacqueline and Grace’s story

 

Four years ago, Jacqueline was vacationing with her family and friends in Italy. The Grade 9 student was playing out in the pool. At one point, she jumped into the water—and never came up.

At first her family thought Jacqueline was playing a joke on them.

Then the panic set in.

They quickly jumped in and hauled Jacqueline out of the pool. She was hurt, but soon she regained consciousness.

“They thought I hit my head at the bottom or something like that,” says Jacqueline. “What we didn’t know then, but came to learn, was that was one of my first seizures.”

Later that year, Jacqueline suffered from a second seizure. The family immediately took her to BC Children’s Hospital, where she was diagnosed with epilepsy. This was the cause of the grand mal seizures she had experienced–causing a loss of consciousness and violent muscle contractions.

Jacqueline remembers crying in the car on the way home. After that, she was ready to face her new reality.

But she wouldn’t have to face it alone.

Leading parallel lives

“I never had a ‘big’ seizure like Jacqueline. Mine were myoclonic jerks, so basically I would drop things, throw or buckle a leg,” says Grace, who came to know Jacqueline through their shared experience with epilepsy. “For me, it was clearly something more serious when my arm randomly threw a smoothie across the kitchen.”

In 2018, shortly after her 16th birthday, Grace went to BC Children’s. It was here where she was diagnosed with epilepsy.

“It felt better to know I had something,” says Grace.

However, soon she like Jacqueline would feel the impact that a complex disorder like epilepsy would have on her life.

Planning time with friends is complicated. Overnights haven’t been an option. And perhaps above all, the stigma and misunderstandings about epilepsy has made understanding even among close friends a struggle.

“There were always questions or comments from friends like, ‘Why can’t you do this?’ or ‘Oh come on it’s not that bad’. They don’t know that for me, I have to overprepare for everything.” – Grace

These are a few of many reasons why both women, along with their families, saw an opportunity to do better.

Envisioning a healthier future

Jacqueline’s mother Shannon and Grace’s mother Jenny have been close friends for many years—and became even closer after their daughters were both diagnosed with epilepsy. For both of their families, there was much to be desired when it came to epilepsy care in BC.

“Once you’re diagnosed, the care has to go up, not down,” says Jenny. “We’re going to make this better.”

This is why when their close friend and philanthropist Ali Pejman approached them with an idea, they jumped on it.

Jenny and Shannon joined the Pejman & Friends Epilepsy Fellowships and Research Initiative, a partnership with Ali Pejman that is providing funding to both BC Children’s and Vancouver General Hospital (VGH). The funding is being used to recruit the next generation of medical superstars in the epilepsy field, providing new levels of care for patients, ensuring a strong continuum of care as young adult patients transition their care from BC Children’s to VGH, and contributing to groundbreaking research for many years to come.

Both BC Children’s and VGH are cornerstones of epileptic care in BC, supporting more than 20,000 people living with this disorder throughout the province.

“Ali is so passionate, and it was an easy choice to make once we understood the need,” says Shannon.

Leaning on each other

Despite the ups and downs since both of their diagnoses, including constant adjustments to their medications that continue to this day, the two young women are taking charge of their lives.

“You don’t let it control you. You control it.” – Jacqueline

In fact, both young women have plenty to look forward to in their lives. Starting in the fall, they are both attending Queens University in Kingston, Ontario.

Grace is studying sociology. Jacqueline is studying environmental science. And both of them are looking forward to clothes shopping before the school year starts in September.

“I’m moving into a house with my friends,” says Grace. “There are so many things to look forward to.”

And while they are off studying, their moms will be home in the Lower Mainland, continuing to fight for a healthier future for all children with epilepsy.

“We are going to do everything possible for our girls,” says Jenny and Shannon.

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