Research builds my children’s community

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.