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'Quite literally their only hope': Parents fight to cure sisters diagnosed with rare, fatal disorder

Posted at 9:37 PM, Jul 15, 2020
and last updated 2020-07-16 01:16:15-04

WHEAT RIDGE, Colo. — Playful laughs echo through the back yard of the Harrison family, as 7-year-old Kinley and 4-year-old Kennedy play on the swingset, the trampoline, and the grass with their parents looking on.

“They’re go, go, go,” mom Kylie Harrison described.

But the happiness exuded from the two little girls is overshadowed by a future revealed to their parents just six weeks ago. One day after the Harrison family welcomed their newest member, Kieran, into the world, they received news from Children’s Hospital.

“Not only Kinley but Kennedy as well had been diagnosed with GM1 gangliosidosis, which is an exceptionally rare genetic disorder. It occurs in one of every 100,000-200,000 births,” father Kyle Harrison said. “There is no treatment and no cure for GM1 and it is always fatal in children.”

The parents’ world was shattered. Their smiling little girls may not live past the age of 10.

“It’s absolutely your worst nightmare to know that your babies are gonna regress and slowly die,” Kylie said.

GM1 causes toxins to build up on the brain and spinal cord, eventually causing an inability to walk and talk, according to the girls’ dad.

“There will be a day where they won’t be jumping on their trampoline anymore. They won’t be swinging on their swings or riding their bicycles. And eventually, it will take their lives,” Kyle said.

The family found out the day after their third daughter was born.

“You’re on both ends of the spectrum of emotion. We went from the absolute highest of highs to lower than low,” Kyle said.

But a big question still lingered. Did baby Kieran also have the disorder? It took two weeks for the newborn’s genetic tests to come back.

“She does not have it and she will not pass it on to her children,” Kylie said. “We’re grateful that Kieran doesn’t have it, but my two other babies do.”

The fact that there is no cure and no treatment wasn’t enough for the Harrisons. They immediately started raising money towards research into the extremely rare disorder.

“Our hope is to advance all of the possible treatments that might be available to them,” Kylie said.

“It’s quite literally their only hope,” Kyle added.

They started a GoFundMe to benefit the Cure GM1 Foundation.

“Every penny is going to the Cure GM 1 foundation. It’s 100% tax deductible and it is going straight to research that could help extend the life of our babies,” he said.

The goal is to help fund clinical trials that could improve the girls’ quality of life by pushing back their regression, and help other kids facing the same fate.

“That they can walk for another summer, play with friends for another summer, continue to stay in school with their classmates, play with their cousins. Any day we can get to add to that is worth it,” their dad said.