WHEAT RIDGE, Colo. (CBS4) — While the world is concentrating on COVID-19, the Harrisons in Wheat Ridge are focused on a rare, genetic disorder. In June, they learned that two of their young daughters are slowly dying.
As they swing and squeal in their backyard, 7-year-old Kinley and 4-year-old Kennedy seem so carefree — but their loving parents are suffering.
“It might be the last summer that they are able to run around and go and play,” Kyle Harrison explained to Health Specialist Kathy Walsh.
Parents Kyle and Kylie Harrison started worrying when Kinley was 4 years old and experts could not explain why she was behind in speech.
“As time went on we noticed more and more delays,” said Kylie.
On June 5, the day after their third daughter, Kieran, was born, the Harrisons got a devastating diagnosis.
Kinley has GM1 Gangliosidosis, a rare, inherited disorder that is always fatal in children. Kennedy has it, too.
“To have both of them diagnosed like that was unbelievable,” said Kylie choking back tears.
“It was like a punch to the gut, then someone coming up and kicking you right when you hit the ground,” said Kyle.
The disease, caused by the absence of a vital enzyme, destroys nerve cells in the brain and spinal cord. It will slowly take away the girls’ ability to do everyday things.
“I am so scared of the day that they wake up and maybe can’t talk to me,” said Kylie.
The Harrisons have learned that baby Kieran is unaffected.
“We were so relieved, but still so heartbroken about everything else,” said Kylie.
The Harrisons aren’t giving up on their girls.
“It’s not fair, they didn’t have any sort of choice in this,” said Kyle.
They have started a GoFundMe to raise $2 million for research. They know it is a mission of hope for a treatment, a cure, a miracle.