UPDATE: Match Found For Baby MadalaynaMarch 7, 2017 8:58am
Although her battle against a rare genetic disorder is not over, the mother of a 5-month-old Windsor baby says a bone marrow match has been found for Madalayna Ducharme.
Tamara Ducharme says she got the good news Monday, “but I wanted to know how to say it properly. I know a lot of people are following the story and a lot of people wanted to know when we got a match.”
She posted the update on Facebook Tuesday morning.
Madalayna has malignant infantile osteopetrosis. The disorder causes bones to grow too dense pushing out bone marrow, affects vision, hearing, liver and lung function. It is life threatening, and the infant needs a bone marrow transplant to stop the disease in its tracks.
Ducharme says she has been on an emotional rollercoaster since she found out.
“A match has been found, but there are still some other hardships that we’re gonna have to face too,” she says, adding that they will have to wait to see if Madalayna’s body accepts the match and chemotherapy.
Ducharme says Madalayna will receive the transplant through a transfusion and could start chemotherapy as early as this week.
“We’ve spoken with doctors — and they can’t promise it will take the disease away,” she says. “From what I’ve heard anybody that’s dealt with this disease, if they’ve had a successful transplant, they’ve been doing well.”
So far, the family has been back and forth between Windsor and Children’s Hospital of Western Ontario in London. Now, they will travel to Sick Kids Hospital in Toronto.
Ducharme says a friend is organizing an upcoming fundraiser to help the family with expenses at 4pm Saturday, April 1 at Parkwood Gospel Temple in Windsor.
A series of swabbing clinics were held in Windsor to find Madalayna a bone marrow match, but Ducharme says the doctors could not tell her if the donor was found through the events.
“She looks great. She’s a happy little girl,” says Ducharme when asked about Madalayna’s health. “It’s going to be hard to see her go through this process.”
In the meantime, Ducharme says she takes some comfort from the encouragement she’s received from across the country since taking her story public.
“A lot of people have followed this story, and not just in Windsor-Essex,” says Ducharme. “I’ve had people message me from New Brunswick saying how can I help her?”