Family of Quebec girl with rare disease struggles to fund therapy

Funding issues for QC'er with rare disease Mila Goolab has a rare disease that makes walking very difficult.

The family of a girl with a rare disease – who shared a special on-ice moment with PK Subban in January – is struggling to get her the therapy she needs.

Mila Goolab has transverse myelitis, a rare inflammatory disease causing injury to the spinal cord, resulting in weakness.

Diagnosed at 17 months old, Mila, who is now seven, needs physical and occupational therapies to help her work towards walking.

After years of support, in December, her family was told by the local health authority that Mila's therapy hours would be cut in half.

"They don't believe in the potential that she can still improve," said Melanie Joanette, the girl's mother.

The family is now paying $120 an hour for movement therapy to improve her strength and mobility.

"We are overwhelmed with all this. It's hard to accept the condition, what happened to our daughter, and now we have to fight every day to get the services."

The founder of the Canadian Transverse Myelitis Association, Kimberley Kotar, also lost her ability to walk.

Physical therapy helped her manage the disease, and she has gone on to run a marathon in every province to raise awareness and money.

"We don't get any federal funding; we don't get any provincial funding. So we rely on the kindness of strangers to help to keep us alive so we could help families who are struggling with this diagnosis," she said.

Kotar is training for a half-marathon while pushing Mila in a stroller.

"I fill up the stroller [to train] because Mila is 78 pounds, and I need to get used to pushing the weight for race day," she explained.

She aims to raise $15,000 to help pay for Mila's therapy.

"We want to line the race course with spectators to cheer her on," she said.

The Bouge Bouge marathon in Ile Perrot takes place on May 7 – Mila's birthday weekend.