Daughter. Sister. Cuddler. Trooper. Born March 15, 2014, in High River, Alta.; died Dec. 16, 2016, in Calgary, of Sandhoff disease; age 2.
When Kit Payette was born, her parents, Bruno and Leslie, dreamed that she would grow up to be an astronaut, so named her after the first Canadian to walk in space, Col. Chris Hadfield. (That she shares a last name with another Canadian astronaut, Julie Payette, was a happy coincidence.)
Kit was a happy, chubby baby who delighted in laughing at her older sister Posie’s antics. She enjoyed viewing the world – and Posie’s soccer practices – from the comfort of a baby carrier and travelled to visit friends and family in Fernie and Nelson, B.C., and Clear Lake, Man.
By six months of age, Kit stopped meeting milestones on the expected schedule. Still, concerns could easily be chalked up to unfair comparisons to Posie, who had always been ahead of the curve. By her first birthday, Kit’s regression was undeniable, though it took several months, an MRI and many meetings with specialists to confirm a diagnosis.
At 14 months, the family received the devastating news that Kit had Sandhoff disease, a rare metabolic disorder that progressively destroys the nervous system resulting in seizures, vision and hearing loss, and paralysis. There is no treatment or cure, life expectancy is three years.
Bruno and Leslie’s dream of Kit becoming an astronaut was no longer possible, yet she still filled the potential of her namesake: she lived a life of adventure and appreciation.
She packed an impressive number of adventures into her two and three quarter years. She travelled to Halifax for a wedding, to Minnesota to participate in a research study and to Florida for a conference of the National Tay Sachs and Allied Diseases Association. The family also went to Harrison Hot Springs, B.C., on a wish trip provided by the Quinn Madeleine Foundation so that the family could be outside together in warm water, a sensory experience Kit enjoyed despite her disease. As Kit’s illness progressed, these journeys would seem overwhelming to an outsider. In addition to the usual baby gear they had to transport oxygen, a suction machine, a feeding pump, a wheelchair and positioning aids, but Bruno, Leslie and Posie were amazingly dedicated to giving Kit the fullest life possible, and Kit always pulled through.
In An Astronaut’s Guide to Life on Earth, Chris Hadfield writes: “Life off Earth is in two important respects not at all unworldly: You can choose to focus on the surprises and pleasures, or the frustrations. And you can choose to appreciate the smallest scraps of experience, the everyday moments, or to value only the grandest, most stirring ones.”
Kit loved the sunshine, swimming, her middle finger, her mama’s milk, walks in the woods, stopping to smell wild roses and hanging out with her big sister. She got a raw deal in the genetic lottery, but hit the jackpot with parents who gave her the best life she could have and a community of family and friends who reached out with kind words and actions.
Kit is deeply missed everyday and will live in our hearts forever.
Lauren Caines is a family friend.Report Typo/Error
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