Donald Teuma-Castelletti
PONTEFRACT June 24, 2017
Every time an eight-year-old Mansfield girl steps outside, she must put on her sunglasses. She could start puking at anytime, she’s constantly in and out of the hospital and requires a mix of medications all the time.
For MaryLynn Lepack, this is her reality everyday. Suffering from cystinosis, a genetic, metabolic disease, her body has an excessive build-up of the amino acid cystine in her cells. This disease negatively affects and destroys all major organs in the body and doesn’t have a cure.

However, her family has far from given up hope of someone finding a cure, and that’s why they held a charity golf tournament last Saturday at the Pontefract Golf Club. Supporting the Cystinosis Research Foundation (CRF), 40 golfers and their families came out for the cause.
“You have no idea what you’re stepping into [with the diagnosis],” said Marthe Drolet, Lepack’s mother. “The first year was traumatizing.”
Without a cure, Lepack has been on a steady stream of medications since she was young. She was first diagnosed with cystinosis at 18 months, after her parents noticed their daughter was different at six months old.
Cystinosis is a rare disease affecting less than 50 people, mostly children, across Canada. There are only three cases in the Ottawa area currently.
“Last year, [Canada] lost four people to cystinosis, all under the age of 34,” said Drolet.
With so few cases across North America, the CRF, a US-based non-profit organization, is the largest fund provider for research into a cure.
“Because the disease is so rare, most money raised for research is solely based on family-organized events,” she said.
Drolet and her husband attended a conference put on by the CRF in California this year, meeting other families affected by the disease, learning about research their fundraising helps and different efforts those families employ to raise money.
Organized with a bunch of help from Drolet’s mother, Ghislaine Drolet, the tournament raised $5,158 for the CRF. However, that total was raised to $5,415 when Marthe’s church, the Church of Faith, Praise and Prayer in Campbell’s Bay, held a special collection to add to the day’s fundraising efforts.
Last year, over $6,000 was raised by this event, and an additional $1,500 was raised through an ATV run the family annually hosts.
Marthe is now looking into selling bracelets near Christmas in support of the CRF, an idea she gathered from the conference.