A Windsor family is looking for a stem cell match after their 5-month-old daughter was diagnosed with a rare genetic disorder.
Madalayna Ducharme has malignant infantile osteopetrosis, which doesn't allow the bones to work properly and can cause vision and hearing loss. The disease causes the bones to be too dense, pushes out bone marrow and affects liver and lung functions.
"If we don't get this figured out and we don't get a match and we don't get a transplant her vision will go, her hearing will go and ultimately all of her quality of life is gone," says Madalayna's mom, Tamara Ducharme.
Madalayna Ducharme (provided by Tamara Ducharme)
Ducharme says one transplant would stop the disease in its tracks but there is no saying how long it will be before Madalayna loses her vision or hearing. For now Madalayna appears to be a perfectly healthy little girl.
"A normal person looking at her, seeing her in the mall or visiting would have no idea. We had no idea, if our doctors weren't so smart and on things we would still be dealing with maybe not even knowing," says Ducharme. "100% of untreated cases they lose their vision. So right now she's got good vision and her hearing is good for now that's why we're pushing because we don't want anything to deplete on her."
Anyone ages 17-35 with a valid health card can register to be a donor. Registering takes one easy step of a swab of the cheek. If matched, the procedure could be as simple as a blood donation.
"It's just drawing of a blood now it's not the scary thing that everybody thinks where they have to drill into your hip and get the bone marrow, science has come a long way," says Ducharme.
Clinic hours for the Canadian Blood Services office in Windsor
A registration event is being held at St. Clair College main campus on January 26 between 9:30am and 3:30pm. If you cannot make the event, you can also register by visiting the Canadian Blood Services office on Grand Marais or go online and have a kit sent directly to your house.
Ducharme says if you can't register to be a bone marrow donor donating blood is just as important as if a match is found Madalayna will need multiple blood transfusions.