Skyler's Story

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Skyler Jones is the family funny guy, a loving big brother and a superhero to his family. When he was born, doctors had difficulty determining exactly what diagnosis best fit his array of symptoms. Eventually, most agreed that FG syndrome (Opitz–Kaveggia syndrome) fit best. What followed were years of therapy, surgery and many procedures which Skyler has suffered with gracious kindness and a good heart. None of this has stopped him from loving life, especially his family, animals and sports. Skyler is on several special needs sports teams, including hockey and baseball and he loves to swim. He’s enamored of farm life, riding his horse Arnie and recently learning to drive a tractor! 

Skyler can do many things in spite of the challenges that his illness presents. With two heart surgeries behind him and a new medical implant to assist his bowel, Skyler is medically stable and charging into life with the gusto and good cheer of most typical pre-teen boys. He’s learning his limits and finding that he can do many fun and exciting things. He’s raising chickens and helping with lambs. He loves his little brother, and family time is very special, and funny, because of Skyler.

His parents’ greatest fear is that Skyler will be held back because other people will look at his disabilities and assume he can’t accomplish goals. Skyler has proven otherwise and will continue to impress everyone who gives him a chance. His family takes great comfort in his hilarious sense of humor and the friends they have made while traveling along this medical journey with Skyler. His mom’s advice to anyone facing a similar challenge is to seek support and take time for self-care. She says, “No one should have to be strong all the time.”

Written by Andrea Lee