TORONTO Kaitlyn Pogson is a bubbly, giggly, blue-eyed, blonde-haired baby girl.
While she looks like a typical baby, her parents know that as she gets older, shell regress, facing developmental and cognitive delays because of a rare form of infant epilepsy called Dravet Syndrome.
Its described as potentially fatal the young victims have seizures frequently and for extended periods of time. Last Tuesday, for example, on what was any other day at home, Kaitlyn had an hour-long episode.
You feel helpless all you can do is stand and watch, theres nothing you can do to help your child, Kaitlyns father, Barry, told Global News.
Sometimes seizures are so strong, Kaitlyns parents take her to hospital. The 19-pound baby could be asleep and recovering for days because she receives heavy doses of medication to interrupt the seizures.
Dravet Syndrome, also known as severe myoclonic epilepsy of infancy, usually appears in infants as early as one year old. Babies will encounter a seizure for Kaitlyn, it happened at two months and the frequency of seizures quickly escalates.
Dravet syndrome is one of the bad forms of epilepsy, Dr. Berge Minassian, of Torontos Hospital for Sick Children, said. Its genetic, but its not hereditary.
The episodes are so uncontrolled and so long, they interrupt a childs traditional development. By age one, those with Dravet start to regress and even plateau in their growth.
They invariably have developmental delays, they have intractable seizures, they sometimes develop autism. Its not just the seizures, it affects their cognitive function quite severely, Minassian explained.
Its been hard for Kaitlyns parents, Barry and mother Shannon, to know that their daughter is headed for more health issues.
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