Susan and Jalissa MacLellan travel for doctor appointments in Halifax, driving a van with 400,000 kilometres on it. The van has multiple mechanical issues. A GoFundMe campaign is underway to raise enough money for a van with a motorized wheelchair lift.
YARMOUTH - Fifteen-year-old Jalissa MacLellan, who has Hurler syndrome, must see doctors for conditions affecting almost every part of her body.
Most of those appointments are at the IWK hospital in Halifax. She and her mother, Susan, must travel in a van with close to 400,000 kilometres on the odometer and multiple mechanical issues.
I just got a call yesterday that they need us up there (Halifax) for an MRI and I don’t know how we’re going to get up there.
Susan MacLellan, mother of Jalissa, her 15-year-old daughter who has Hurler syndrome.
A GoFundMe campaign has been launched for the pair but it’s a long, slow trip towards their goal of $60,000 – the amount required for a van with a motorized wheelchair lift. In the past six months, just $2,700 has been raised.
It was Susan’s mother, Marion Fitzgerald, (who died in February) who first noticed Jalissa’s symptoms as a baby.
The infant’s hands were the size of a two-year-old’s. She had a continual thick, white mucous discharge from her nose and couldn’t be placed on her back because of severe pain from her crooked spine. She had a protruding forehead and unusual facial features.
Tests were done and the MacLellans awaited the call.
“When we heard the news, our whole world changed,” said Susan.
A bone marrow transplant match could help halt progression of the disease but none could be found in North America.
When a donor was finally located, a lucky break resulted. Jalissa’s graft was highly successful and a long life expectancy is now possible.
After 13 surgeries on her back to correct her spine, Susan says Jalissa’s last one, when she was nine, went terribly wrong. She can no longer walk. The care required to keep her healthy is enormous.
She must be turned three times during the night to prevent bedsores. She continues with orthopedic appointments because of her spine. She sees a gynecologist, optometrist, dentist and audiologist in addition to requiring regular bloodwork and breathing tests.
“I just got a call yesterday that they need us up there (Halifax) for an MRI and I don’t know how we’re going to get up there,” said Susan.
The van they use was received in 2005 as a secondhand vehicle and was funded by the Presidents’ Choice children’s charity.
Every five years, another application can be made to see if they qualify for another $20,000.
Now, however, Susan has back problems and pinched nerves in her neck and shoulders.
“I’m not supposed to be lifting but I have no choice. There’s just her and me here,” she said.
“What we’re looking at, to save my back and it would be a lot easier on us, is to get a van with a motorized wheelchair lift.”
These vehicles can cost in the vicinity of $60,000.
Although the Shriners do help out with some costs associated with travelling, life is often still tight and troubled for the MacLellans.
Visit this link to donate to the Jalissa’s GoFundMe campaign.