Research builds my children’s community

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Finding the genetic cause of her daughters’ illness was the key Samantha Knapp needed to tap into a community of parents going through the same thing.

Having a sick child, and not knowing the cause of her illness was a frightening and isolating experience for Samantha Knapp, who has six children, two of whom have a rare genetic disorder that causes severe seizures in newborns and infants. Nearly twenty years ago, when Knapp’s eldest daughter Asia started having seizures as a baby, very little was known about this condition.

Read more of Research builds my children’s community.

Find more stories of research in action on Innovation.ca, the website of the Canada Foundation for Innovation.

Having a sick child, and not knowing the cause of her illness was a frightening and isolating experience for Samantha Knapp, who has six children, two of whom have a rare genetic disorder that causes severe seizures in newborns and infants. Nearly twenty years ago, when Knapp’s eldest daughter Asia started having seizures as a baby, very little was known about this condition. With the help of many doctors, including Kym Boycott at the Children's Hospital of Eastern Ontario Research Institute in Ottawa, the Knapp family was able to find a diagnosis for both Asia, and her little sister Sienna who suffers the same symptoms. Knowing what was at the root of her children’s illness was the piece of information Knapp needed to not only manage the disease, but also to find a community of support among parents going through similar things.

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Canada Foundation for Innovation

The Canada Foundation for Innovation (CFI) was built on the ideals of thinking big and investing in areas that matter to Canadians. Since its creation in 1997, the CFI has ensured Canadian researchers have the tools — the cutting-edge labs, facilities and equipment — they need to push the frontiers of knowledge in all disciplines, and to contribute to the full spectrum of research — from discovery to technology development. 

https://www.innovation.ca/