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Yaya's story against Leukodystrophy 4H

Yaya was a gentle and happy child born in 2015 with a deadly neurodegenerative disease that has no cure. Faced with a serious lack of information and resources, her parents had to rely on strength and determination in order to help their child.

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Becoming a parent is not easy, especially when it’s your first child. The learning curve is steep and at the end of the day all you can hope for is to do the best for your child. For some, this process comes with an additional set of complications when the child’s health is at risk, as we’ll learn through the testimony of Ron and June and their daughter Yael born in 2015 and affectionately nicknamed Yaya.

At only 6 weeks old, Yaya started missing milestones and showing signs of serious health problems. By 3 months old, their daughter’s situation was deteriorating, and they were bouncing between multiples doctors and specialists trying to determine the cause. Yaya was finally diagnosed when she was 8 months old: 4H Leukodystrophy, a deadly neurodegenerative disease that has no cure.

Yaya’s parents immediately reached out to Dr. Geneviève Bernard, investigator and pediatric neurologist at the Montreal Children’s Hospital and the McGill University Health Center Research Institute (MUHC RI), an international leader in leukodystrophy research, who also received funding from the Foundation of Stars in 2019. She responded within hours, and within a week, Ron, June, and Yaya flew to Montreal to see her.

"Before meeting Dr. Bernard, everything was unknown to us. Information was inconsistent and we didn’t know what to expect. She changed all that - she did understand. She explained what was happening and helped us form expectations of what was to come. She wasn’t just treating Yaya, she was treating our whole family. Her guidance enabled us to make the right decisions for Yaya and to make the most of the time we had together. As Yaya’s disease progressed, she was generous with her time and made herself available to us and our other doctors who did not understand this disorder either. Thanks to her, we had the information we needed to make difficult decisions. As a result, we are at peace with those decisions, and we take comfort in that", explains Ron.

At only 13 months old, Yaya sadly passed away. They have supported Dr. Bernard’s work ever since. "Her compassion was unparalleled, and she was totally devoted" says Ron. “We want to do whatever we can to help.”

This strength and fighting spirit, which Yaya’s parents demonstrated out of love for their child, motivates them today to help other children like her and their families. They hope that with more research and information, fewer families will have to navigate through the unknown, as they did. Their goal is to accelerate the timeline to find a cure. They are extremely grateful for the ground-breaking work that Dr. Bernard is doing, and to everyone who is donating and fighting leukodystrophies. "It is truly our privilege to help" June and Ron mention.

Just as Ron and June did, we would all travel to the moon and back for our children. Let us follow their lead and help support pediatric research. Each donation can make a difference!