A Maple Ridge family whose child has multiple seizures a day is seeking answers from 小蓝视频's health-care system.
In an interview with Glacier Media, Kelsey Knowles is speaking out after taking her stepson Brenton to 小蓝视频 Children’s Hospital and several other Lower Mainland hospitals without any answers or plans to move forward.
"I definitely feel helpless every time we go to 小蓝视频 Children's Hospital. I know they do wonderful work, but in our situation, it's left us feeling completely helpless,” said Knowles.
Brenton has roughly 15 medical diagnoses; the most recent one given to him was autism-related epilepsy.
“The seizures that he's having apparently are not typical of that disorder, so the doctors are really left puzzled about what's happening right now with his health,” explained Knowles.
His medication is costing the family roughly $2,500 per month. Knowles has also put her career on hold to take care of him full-time.
“I’m feeling very overwhelmed, to be honest. It’s been an extremely long journey,” she said.
During his seizures, Brenton will stop responding and his skin turns pale. Knowles said he is unaware of his surroundings, does not remember it happening and his breathing is reduced.
"He's very lethargic and just very confused. He's also lost a lot of his writing and reading skills.”
Brenton was born with a diaphragmatic hernia and was placed in a coma for the first six months of his life.
Four months ago, he was only having one seizure every couple of days.
“Now, we're up to the point where he's having about 10 major seizures a day, and sometimes up to 15,” said Knowles. “We can’t leave him alone."
The family is concerned his condition will keep deteriorating and he will die.
“It's quite scary. There are times that we are afraid to go to bed because we are scared we'll wake up to a deceased child,” she said.
Glacier Media reached out to 小蓝视频's Ministry of Health for comment on Tuesday but did not hear back by publication time. This story will be updated once a response is given.
Weekly hospital visits
Brenton and his stepmom spend their days inside trying to keep him calm and comfortable.
"I rarely get to even leave the house unless it's to the hospital, because him even going outside will trigger a seizure,” said Knowles.
They have brought Brenton to Ridge Meadows Hospital, Surrey Memorial Hospital, Abbotsford Regional Hospital, Royal Columbia Hospital and 小蓝视频 Children’s Hospital. They're in a hospital about two to three times every week.
“We pretty much exhausted most of the local hospitals closest to us and just it never pans out for us,” said the mother.
They do have a neurologist and have run tests but still feel they have no answers.
“It’s been extremely difficult," she said.
“We'll bring him into emergency, his vitals will be fine, so most times we're sent home and told to follow up with a neurologist, which is almost impossible, very hard to get a hold of.”
Since sharing their story on social media, Knowles has had other families reach out in support. An has been created for the family with more than $7,000 raised.
"I want answers for Brenton, and a plan, at least going forward on how to care for him, how to navigate this as a parent,” she said.
“I am watching him wither away.”
