Jacob Redmond
Well-Known Member
Mirai-Josiah Kushida, who had turned away from his feeding syringe, suddenly cranes his neck toward his food.
He's not asking to be fed. He stays still, his mouth open.
"He's just having a seizure right now," says Lillian Kitcher, his mother.
Kitcher is nonchalant. She's seen so many of the minute-long seizures that afflict her wheelchair-bound, seven-year-old boy. They can happen as often as 11 times a day.
To those unfamiliar with the symptoms, it's almost impossible to tell Mirai is having a seizure. He's not convulsing and it's hard to tell if he's conscious.
"It's really crucial for him to have someone that knows him," Kitcher says. "I'm not a professional nurse but I'm a nurse for him ... others might think he's just smiling."
Mirai suffers from Dravet syndrome, an extremely rare and severe form of epilepsy that begins in infancy. The usual anti-epilepsy medications don't work for all patients and the condition is incurable.
Mirai had his first seizure at two months of age. Three days later, he was back at the hospital with another that lasted 20 minutes.
At first, nobody -- either at CHEO or the Sick Kids hospital in Toronto -- seemed to know what was wrong with him.
"As a mother, having a little two-month-old that's seizing constantly. ... It was extremely frustrating," Kitcher says.
At 10 months, Mirai was finally diagnosed in Japan. Blood work confirmed he had the gene mutation for Dravet syndrome. (Mirai has dual citizenship in Japan and this country.)
By the time he was a year old, he was on four different anti-epileptic medications and had gone through a high-fat diet, which seemed to control his seizures but had to be stopped due to the acidity of his body.
Mirai was also developmentally delayed, one of the features of Dravet syndrome, due to brain damage from seizures.
He started saying a few words and began to walk at three years of age.
In May 2013, things took a turn for the worse.
Mirai lost all his skills -- including walking and talking -- after having a cluster of seizures, during which Mirai's brain was damaged beyond repair.
"My life changed, basically, in a blink of an eye," Kitcher says.
"I remember saying to the doctors, 'I don't understand.' ... I just kept on thinking in my head: 'He was just walking the night before.'"
Since then, Mirai has been completely dependent on Kitcher's care.
Currently, Mirai is takes a "cocktail" of different anti-epilepsy drugs -- Valproic Acid, Clonazepam and Baclofen -- but he still has seizures on regular basis.
When it comes to Dravet syndrome, Kitcher says there are no other drug recommendations from the health-care professionals, and she's now considering trying marijuana oil to control his seizures and relax his muscles.
About a year ago, Kitcher decided to try different forms of therapies she came upon her own research -- therasuit therapy and conductive education -- to get her son's posture aligned, as his muscle mass was getting weaker and his spine was becoming crooked his lack of movement.
Therasuit therapy uses a specialized suit to re-establish correct postural alignment and normalize muscle tone. Conductive education is similar, but does not use the specialized suit.
They're also working on sitting, standing and crawling.
Because both therapies are considered to be "alternative therapies" by the province of Ontario and are not covered by OHIP, Kitcher has been paying thousands of dollars for them, out of her savings and donations.
Therasuit therapy, which Mirai attends four times a year in Toronto for three weeks at a time, costs $5,500 for three weeks. Conductive education, which he attends four times per week in Ottawa, costs $3,500 per month.
They also attend occupational and speech therapy sessions, which Kitcher cut down significantly due to the costs.
Kitcher, who can't get private health insurance for Mirai due to his pre-existing conditions, says she dreads the day she will have to stop the treatments, likely soon.
"What I'm hearing (from the physicians) is, 'It's complex,' 'It's rare,' 'You're doing a good job and keep doing what you're doing,' ... And what I'm doing is not free."
Since undergoing the therapies, Kitcher says, Mirai has been able to move more. Just a year ago, he wasn't even able to move his neck, but now can to let her know he's not interested in the suction that clears out his phlegm.
Kitcher's goal is for Mirai to move more freely and to be able to communicate with her son, even just by using eye gaze.
Conductive therapy and therasuit therapy are not covered by OHIP beacuse they're not physician, dental surgeon or optometry provided services, explained Joanne Woodward Fraser, a spokeswoman for the Ontario Ministry of Health and Long-Term Care.
After seeing how much the therapies have helped her son, Kitcher says it "eats at her" to know that she may have to stop due to the costs.
"What do you do? Do you accept the way it is and enjoy the time we have left?" Kitcher says. "But once you tried something and it's helping him... I don't know how I can live with myself after that."
This month, Kitcher organized a fundraiser for Mirai to fund his therapies. Still, she says they have a long way to go.
"I'm his voice, I'm his advocate, I'm his cheerleader, I'm his nurse ... I'm also his mother," says Kitcher.
"I'm the one that's pushing for him and saying, 'We have to find a way for you to get some help.'"
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Mother Fights To Help Son With Rare Form Of Epilepsy
Author: Julienne Bay
Photo Credit: Mike Lang
Website: Ottawa Sun
He's not asking to be fed. He stays still, his mouth open.
"He's just having a seizure right now," says Lillian Kitcher, his mother.
Kitcher is nonchalant. She's seen so many of the minute-long seizures that afflict her wheelchair-bound, seven-year-old boy. They can happen as often as 11 times a day.
To those unfamiliar with the symptoms, it's almost impossible to tell Mirai is having a seizure. He's not convulsing and it's hard to tell if he's conscious.
"It's really crucial for him to have someone that knows him," Kitcher says. "I'm not a professional nurse but I'm a nurse for him ... others might think he's just smiling."
Mirai suffers from Dravet syndrome, an extremely rare and severe form of epilepsy that begins in infancy. The usual anti-epilepsy medications don't work for all patients and the condition is incurable.
Mirai had his first seizure at two months of age. Three days later, he was back at the hospital with another that lasted 20 minutes.
At first, nobody -- either at CHEO or the Sick Kids hospital in Toronto -- seemed to know what was wrong with him.
"As a mother, having a little two-month-old that's seizing constantly. ... It was extremely frustrating," Kitcher says.
At 10 months, Mirai was finally diagnosed in Japan. Blood work confirmed he had the gene mutation for Dravet syndrome. (Mirai has dual citizenship in Japan and this country.)
By the time he was a year old, he was on four different anti-epileptic medications and had gone through a high-fat diet, which seemed to control his seizures but had to be stopped due to the acidity of his body.
Mirai was also developmentally delayed, one of the features of Dravet syndrome, due to brain damage from seizures.
He started saying a few words and began to walk at three years of age.
In May 2013, things took a turn for the worse.
Mirai lost all his skills -- including walking and talking -- after having a cluster of seizures, during which Mirai's brain was damaged beyond repair.
"My life changed, basically, in a blink of an eye," Kitcher says.
"I remember saying to the doctors, 'I don't understand.' ... I just kept on thinking in my head: 'He was just walking the night before.'"
Since then, Mirai has been completely dependent on Kitcher's care.
Currently, Mirai is takes a "cocktail" of different anti-epilepsy drugs -- Valproic Acid, Clonazepam and Baclofen -- but he still has seizures on regular basis.
When it comes to Dravet syndrome, Kitcher says there are no other drug recommendations from the health-care professionals, and she's now considering trying marijuana oil to control his seizures and relax his muscles.
About a year ago, Kitcher decided to try different forms of therapies she came upon her own research -- therasuit therapy and conductive education -- to get her son's posture aligned, as his muscle mass was getting weaker and his spine was becoming crooked his lack of movement.
Therasuit therapy uses a specialized suit to re-establish correct postural alignment and normalize muscle tone. Conductive education is similar, but does not use the specialized suit.
They're also working on sitting, standing and crawling.
Because both therapies are considered to be "alternative therapies" by the province of Ontario and are not covered by OHIP, Kitcher has been paying thousands of dollars for them, out of her savings and donations.
Therasuit therapy, which Mirai attends four times a year in Toronto for three weeks at a time, costs $5,500 for three weeks. Conductive education, which he attends four times per week in Ottawa, costs $3,500 per month.
They also attend occupational and speech therapy sessions, which Kitcher cut down significantly due to the costs.
Kitcher, who can't get private health insurance for Mirai due to his pre-existing conditions, says she dreads the day she will have to stop the treatments, likely soon.
"What I'm hearing (from the physicians) is, 'It's complex,' 'It's rare,' 'You're doing a good job and keep doing what you're doing,' ... And what I'm doing is not free."
Since undergoing the therapies, Kitcher says, Mirai has been able to move more. Just a year ago, he wasn't even able to move his neck, but now can to let her know he's not interested in the suction that clears out his phlegm.
Kitcher's goal is for Mirai to move more freely and to be able to communicate with her son, even just by using eye gaze.
Conductive therapy and therasuit therapy are not covered by OHIP beacuse they're not physician, dental surgeon or optometry provided services, explained Joanne Woodward Fraser, a spokeswoman for the Ontario Ministry of Health and Long-Term Care.
After seeing how much the therapies have helped her son, Kitcher says it "eats at her" to know that she may have to stop due to the costs.
"What do you do? Do you accept the way it is and enjoy the time we have left?" Kitcher says. "But once you tried something and it's helping him... I don't know how I can live with myself after that."
This month, Kitcher organized a fundraiser for Mirai to fund his therapies. Still, she says they have a long way to go.
"I'm his voice, I'm his advocate, I'm his cheerleader, I'm his nurse ... I'm also his mother," says Kitcher.
"I'm the one that's pushing for him and saying, 'We have to find a way for you to get some help.'"
News Moderator: Jacob Redmond 420 MAGAZINE ®
Full Article: Mother Fights To Help Son With Rare Form Of Epilepsy
Author: Julienne Bay
Photo Credit: Mike Lang
Website: Ottawa Sun
