These 2 Little Girls Have A Fatal Brain Disease And Their Family Is Trying To Raise $2 Million Dollars To Help Treat Them
Wheat Ridge, Colorado. Kylie and Kyle Harrison live in Wheat Ridge, Colorado. When the couple welcomed their youngest of three daughters Kieran to their family, they should have been able to just enjoy their new bundle of joy.
Sadly for the Harrisons, they learned the day after Kieran was born that her two older sisters, 4-year-old Kennedy and 7-year-old Kinley, have a fatal brain disease.
Yes, you read that right, both of these little girls, both of these sisters, ended up being diagnosed with GM1 Gangliosidosis, which is an extraordinarily rare genetic disorder.
Now, Kylie and Kyle are trying to raise $2 million dollars to help get Kennedy and Kinley the treatment they need.
“Two of your children have a fatal, untreatable disease – they are dying.” These are the first words Kyle shared on the GoFundMe page for Kennedy and Kinley.
“Without warning, we were faced with the sobering realization that our baby girls are dying. Before this disease takes them, Kinley and Kennedy will very slowly lose their ability to walk, talk, eat…and even smile,” he continued.
Since receiving their diagnoses, the family has spent the past 4 years trying to figure out what was behind Kinley’s developmental delays.
They went to tons of specialists, booked multiple appointments, went through evaluations, and they struggled to get an answer.
Finally on June 5th, 2020, they got one, but it was nothing that they ever could have prepared themselves for.
GoFundMe; pictured above are Kennedy and Kinley with their little sister Kieran
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After undergoing genetic screening, it was revealed that Kinley and Kennedy both have something called GM1 Gangliosidosis.
As of right now, successful treatment for GM1 does not exist, and the rare genetic disorder always ends in fatality for children.
Kyle went on to outline what the new reality for their family now looks like. “GM1 Gangliosidosis is an aggressive disease where the body does not produce adequate enzymes to break down certain molecules.”
“Instead, these molecules collect on the brain and spinal cord, leading to widespread neurodegeneration. The list of complications that our girls face is truly terrifying and the idea of watching them slowly fade away is our worst nightmare.”
Currently, Kinley and Kennedy are in a stable phase of GM1, which means they can talk and walk, but they do have speech problems that make it difficult to know what they are trying to communicate.
“Looking at them, one would never know they both face such a grave fate, but there will come a day where each of them will no longer be able to run outside with their friends, jump on their trampoline, or tell their baby sister “I love you” if no treatments are developed,” Kyle said.
GoFundMe; pictured above Kennedy smiles
“Kinley, who wants nothing more than to be a doctor, nurse, or vet so she can help other people, will eventually not be able to take care of herself independently.”
“Kennedy, who loves to dance and sing and dress up, will someday not be able to do her infamous twirls and leaps, or “freeze” you with her Elsa powers.”
Every day for the family means one step towards their girls not being able to grow up and live out their dreams.
Eventually, Kinley and Kennedy will not be able to communicate at all or know who their loved ones are. They will need feeding tubes.
Just how long the girls have to live isn’t a solid answer. They could only live to be 10 or 15, or they could live into the beginning of their 20s.
Kinley and Kennedy are literally “in a race against time” but their family is hopeful that the recent clinical trial the girls participated in will help get closer to a successful treatment option for the girls.
GoFundMe; pictured above Kinley smiles
“We intend to soak in every moment with Kinley and Kennedy while they can still run, dance, sing, and just be kids. We now know how precious each and every day is, and appreciate every time we hear the words “I love you” from them, or hear them sing lullabies to their baby sister,” Kyle wrote.
“While continuing to give our girls all the love we can, and show them the world as best we can, we simply must fight to find off-label treatments to slow the progression long enough for a cure to be developed. We will still show them the world, provide experiences even seasoned adults have never had, and make sure every moment they have on this earth is not taken for granted.”
Shockingly, it costs between $1 million and $2 million dollars for each girl to go through gene therapy, so Kennedy and Kinley’s family is hoping to be able to raise $2 million dollars to help pay for their treatment.
You can donate to Kennedy and Kinley here.
GoFundMe; pictured above are Kennedy and Kinley with their parents
More About:Human Interest
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