A New Brunswick mother says her child’s condition went undiagnosed after seeing doctors in Fredericton, Saint John and Halifax and is now looking to bring him to Toronto’s Sick Kids Hospital for answers.
Cortney Mclellan says her two-year-old son Keegan spent the majority of his first year crying uncontrollably.
He soon learned to walk but shortly after, that stopped.
“We noticed in his Exer-saucer that one arm would always be down,” she said. “It was his left side.”
Specialists determined that Keegan had a form of dystonia although pinpointing exactly which type proved difficult.
“They told us that he had two different types of dystonia,” she said.
“I did a lot of research on my own,” explained Angie Mclellan, Keegan’s grandmother. “The more I read the more it leaned towards the Parkinson’s Dystonia and Dr. Meek in Saint John agreed with me.”
The condition, which causes tremors and shaking, is so rare that a referral to Toronto’s Sick Kids Hospital was given to the Mclellans.
“They have a few doctors up there that work as a team for movement disorders in children,” said Angie. “I think that that would be the best spot for Keegan to go so that we can get more questions answered.”
Right now medication helps Keegan do the things most kids his age do although his mother is quick to point out that before it kicks in he still feels the effects of the rare disease.
“In the morning he has a really hard time feeding himself,” she said of his time before he receives his medication. “And he’s very shaky, always tripping.”
“If his medication was stopped I don’t think he’d be walking,” his grandmother said.
The New Brunswick Department of Health provides some assistance in travel, however Cortney says driving to Toronto isn’t ideal for Keegan and would prefer to fly with the youngster who is prone to muscle-cramps and spasms.
A GoFundMe page has been set up to assist with their costs and fundraising events are being scheduled for the end of August in Fredericton.
“We’ve had a lot of people try and help us,” said Cortney. “But we haven’t really gotten fully the help we need.”