The Vancouver General Hospital Foundation received a cheque for $27,578.30 toward two new seizure investigation beds in Vancouver on June 13, 2018.
Natasha Wasmuth, from Quesnel, a city in B.C.’s interior, presented the cheque.
Wasmuth is the founder of epilepsyQuesnel (eQ), and has spent every March over the past four years fundraising in Quesnel for the Seizure Investigation Unit (SIU) at Vancouver General Hospital (VGH).
She says she originally set out to raise $25,000 for the SIU. When she thinks or speaks about of all the money she was able to raise, Wasmuth says it’s hard not to cry.
“The heart of the residents and businesses in our little city is beyond words,” Wasmuth writes via email. “To every person that has offered help, donations, promotion, or just wants to learn more, thank you a million times over.”
The SIU determines whether someone with epilepsy will be a viable candidate for brain surgery.
The patient is first referred to the program by their doctor. To be referred to the program, the patient must have refractory epilepsy, meaning that medications either don’t work well, or at all, for them. Some spend up to five years on the waitlist. Others are bumped up more quickly if their seizures continue to worsen.
To determine the patient’s candidacy for surgery, they must stay in one of the two beds in the SIU, often for at least 10 days. After the patient experiences a seizure (or several) while in the clinic, doctors are able to determine if they are eligible for brain surgery.
For Wasmuth, it was the surgery that changed her life.
Wasmuth had her first seizure when she was only 15 years old. It took 10 years of uncontrolled seizures before she was finally given the proper diagnosis: epilepsy.
Years later, in January of 2011, Wasmuth had been tonic-clonic seizure-free for more than two years.
According to the Epilepsy Foundation, tonic-clonic seizures are what most people think of when they hear the word seizure: the person loses consciousness and their muscles stiffen while their limbs take up jerking movements. If a tonic-clonic seizure lasts more than five minutes, it is considered a medical emergency.
But in January 2011, Wasmuth had a tonic-clonic seizure in the shower while she was home alone.
“I smashed my head on the bathroom tile floor,” says Wasmuth, “and had six subsequent partial seizures within the next 16 hours.”
That’s when her doctor first told her that surgery was a possibility for her.
Wasmuth spent 14 months on the waitlist, before finally being admitted to an SIU bed on her 34th birthday in October of 2012.
She was there for almost two weeks before having a seizure. It was her 14th day in the SIU when she had three tonic-clonic seizures in a period of just 24 hours.
Wasmuth had her surgery on August 9, 2013.
Although she hasn’t had a single tonic-clonic seizure since, Wasmuth says she is still in recovery.
She says recovery from her surgery can take anywhere from six months to several years. For Wasmuth, it’s been years.
“As I had seizures for almost 20 years prior, my recovery is still in progress and I will continuously adapt to ‘a new brain,’” says Wasmuth. She says it takes so long because her brain has to learn new neural pathways and functions.
“Being tonic-clonic free,” Wasmuth adds, “and having my safety and independence back makes it all very worth it.”
Although she had to wait 14 months to be admitted to the SIU and learn if she was a candidate for surgery, many wait for up to five years.
To Wasmuth, this is unacceptable. She started eQ in 2014 to begin fundraising for additional beds for the SIU.
As Wasmuth’s fundraising for the SIU beds comes to an end, the VGH Foundation has taken over. They plan to raise $865,000 in total for the two new beds.
With Wasmuth’s donation, the total amount that has been fundraised so far is $171,578.30. The VGH Foundation only received permission to begin fundraising for the beds in the fall of 2017.
With approximately 7,000 potential surgery candidates in B.C. alone (a conservative estimate, as epilepsy is often misdiagnosed) the need for the new beds is great.
The VGH Foundation aims to have the new beds some time in 2019, but there is no official timeline yet.
As for Wasmuth, she’s just getting started.