It's a devastating diagnosis for any parent; finding out their child has been born with a life-threatening disease.

One Western-Quebec family knows that all too well. Their newborn daughter Magnolia has an extremely rare auto-immune disease called HLH disease, or Hemophagocytic lymphohistiocytosis.

She is the Godin-Lemay family’s third child diagnosed with the illness.

The family is turning to the community to help them pay for her care, setting up a fundraising page called ‘Hope for Magnolia.’

Magnolia, who is nearly six weeks old, is receiving treatment for the cancer-like disease at CHEO, about an hour from the family’s home in Bristol Quebec. HLH affects about 1 in 50,000 births.

“She has chemo, steroids, and a slew of other medications many times a day,” mother Cynthia Godin said, who has not left the baby’s side.

HLH affects the immune system, and and in many cases, patients must undergo a bone marrow transplant in order to cure it. That will be the case for baby Magnolia.

“I've been here with Magnolia for 2 weeks straight, and it will probably be a few weeks still for her disease to be under control enough for her to go to transplant,” Godin said outside of Magnolia’s CHEO hospital room.

“Magnolia is in a lot of pain, she cries a lot, so we don’t get a lot of sleep, “Godin said. "Sometimes I feel pretty helpless because we’re doing everything we can to help her, but it’s still moment by moment, day by day.”

CHEO does not handle transplants, so the family hopes it can be done at Toronto’s Sick Kids Hospital, where there are HLH specialists.

But the family says Quebec’s health insurance board, (Regis de l'assurance maladie Quebec, or RAMQ), won’t cover the transplant cost in Toronto, since it can be done in Montreal.

The family plans on appealing that decision, though they said they will take their daughter to Montreal’s Sainte-Justine hospital if that is their only option for the transplant.

CTV Ottawa has reached out to Quebec’s health insurance board for comment, but has not yet received a response, as the request was made on a Saturday.

The couple’s oldest child, nine-year-old Isaac, was diagnosed with HLH when he was two months old. He underwent a life-saving bone marrow transplant at eight-months-old, and has made a full recovery.

A sibling of a child with HLH has a 25 percent chance of having it too.

The couple also has a two-year-old boy, who is a carrier of HLH, but is not affected by the disease.

Now, the Godin-Lemays hope with a life-saving bone marrow transplant, Magnolia will make a full recovery, just like her older brother.