Family of boy, 5, with rare brain condition struggles to cover therapy bills

Five-year-old Luc LeBlanc has many special needs, so his family relies on the generosity of others to help pay for his unique diet and therapy.

Luc was born with a rare brain condition called polymicrogyria (PMG). He struggles with seizures and breathing issues, and he can’t walk or grasp objects because he has hypotonia, which is low muscle tone. He is also partially blind.

His mother, Samantha Monaghan, said there are only about 300 cases of PMG worldwide.

Luc’s family faces a financial burden to cover his care and treatment because not all of it is covered by the Department of Community Services. His medical costs are about $1,000 to $1,200 per month. The special oil from Colorado that stops his seizures costs $300 per month.

Monaghan said she used to get more money from Community Services every month. For the last two years, they’ve taken out loans and fundraise to help pay for supplies and care like oils, herbs, physical therapy, occupational therapy, massage, chiropractic and acupuncture.

The family held a benefit auction last month.

“You know you hate to beg or to ask for money,” said Richard LeBlanc, Luc’s father. “I certainly wish I could provide for my son more than I can and I don’t have to do this.”

LeBlanc has health issues and has been out of work for over a year. Monaghan stays home to care for Luc before and after his three-hour school session in the morning.

The government provides Luc one hour per month for physiotherapy at the IWK Health Centre, but his family says he should be going two to three times a week.

A local acupuncture clinic provides Luc with acupuncture twice a week for free. LeBlanc is thankful, but he wishes he didn’t have to depend on other people’s good will.

“We have to raise awareness,” LeBlanc said about Luc’s disorder.

Luc’s diet is all organic and high in natural fats. This includes olive oil, sockeye salmon, raw fruits and veggies.

“We buy second-hand clothes, but about his food we don’t compromise on it at all,” said LeBlanc.

Luc had a $2,000 feeding machine that made food run automatically, but they forgot it at a shopping centre in November and later couldn’t find it. Now they are using a large injection needle to feed Luc.

Community Services cannot talk about specific cases. A spokesperson says the department provides support for special diets and the disability supports program provides a range of services for children, youth and adults.

“If a family is facing challenges, we suggest they contact their caseworker for assistance,” Heather Fairbairn said in an email.

Around 40 people attended the benefit auction on Nov. 27 at the Halifax restaurant Anchor. They raised $1,560, which will help pay for Luc’s therapy, diet and oil.