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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
