CHEO to head national research on rare children’s diseases


The federal government is investing $4.5 million so two research teams can study genes causing cancers and rare diseases in children.

More research for rare diseases means more hope for sick kids like 15-year-old T.J. O’Connor.

T.J. and his brother, Casey, 13, have undiagnosed neuro-degenerative conditions.

“…After a multitude of medical appointments — and I mean a multitude of diagnostics and laboratory tests — there is still no diagnosis and one may not be forthcoming,” said their mom, Kathy O’Connor of Pembroke.

Life as they know it has changed drastically.

“No more skating, hockey, soccer, climbing stairs…now it’s wheelchairs, braces, exercises that aren’t fun, and fewer friends,” she said.

Minister of State, Science and Technology Gary Goodyear made the funding announcement at CHEO Tuesday morning.

Dr. Kym Boycott, neurogeneticist at CHEO, is leading a team of country-wide researchers examining rare diseases using new technology.

“Currently, we have 140 different disorders ready to go,” she said.

This research will directly affect at least 300 Canadian children and their families.

“If there’s something that we can discover that would change how we help these families right away, those are the ones we’re studying first,” said Boycott.

Researchers at the University of British Columbia will study six of the most challenging childhood cancers known.

Approximately 10,000 Canadian children have cancer.

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