Windsor, Ont. family hopes bone marrow match can save infant daughter
The family of an five month old baby with a rare genetic disorder has asked the public to help save her life.
Madalayna Ducharme needs a bone marrow transplant to survive. She suffers from malignant infantile osteopetrosis, which is when your bones harden. Tamara Ducharme, Madalayna's mother, describes it as when the spongy part of your bones goes away. Eventually there is no room for blood. bone marrow or anything required for the bones to stay alive.
According to the U.S. National Library of Medicine, the disorder affects one in every 200,000 people.
When the family first got the news, they didn't want to share the diagnosis wih anyone.
"It's a shock to the system and we're not quite sure how to handle it," said Charles Ducharme, Madalayna's father.
They searched through family medical history to see if any relatives had the disorder, but came up empty. Charles said it seems to have been hidden for generations.
During a visit to Madalayna's pediatrician, they noticed the top of her head was a little more raised. The doctor suggested the family take her in to the hospital for testing. Charles Ducharme said Madalayna needs a stem cell transplant, which he's been told has a good outlook for his daughter.
If her osteopetrosis isn't treated, she will loose vision, hearing and become prone to infections. The disorder is fatal if untreated.
"Finding a match is very rare and very difficult," said Charles.
The family wants to make people aware of the bone marrow registry, and hopefully find a match for their daughter.
"It's going to be a very long journey," Tamara said.
She's recently been in contact with another mother, who had a baby of the same size diagnosed with the same illness and got a bone marrow transplant. Tamara said that child is now three years old and is doing well.
For her own daughter, Tamara knows this is going to be a long process.
"Even though we kind of have been going through hell for the last two months, we're just getting into it. It's going to be hard. She's going to be strong. I tell her that every day. I tell her that she is our little warrior princess and she's going to get through it," Tamara said.
The family is asking people to attend a bone marrow swab event at St. Clair College on January 26 between 9:30 a.m. to 3:30 p.m. Anyone between the ages of 17 to 35 can sign up for the bone marrow registry.
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