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N.C. (WITN) – An 11-year-old boy with a rare, terminal genetic condition went surfing for the first time this past weekend at Atlantic Beach
Chance Blanton has Walker-Warburg syndrome, a rare genetic condition that affects the skeletal muscles, brain and eyes. He is one of 15 children worldwide with the condition, according to his mother, Angela Wiles. Few patients live past childhood
Wiles said Blanton is legally blind, has lost all control of his muscles and has had up to 150 seizures a day
Wiles said surfing had always been a dream for Blanton, but fear held her back from letting him try it. She said she had a change of heart after she signed a do-not-resuscitate order, meaning Chance will not be resuscitated if his heart stops during his next seizure
“No matter what comes tomorrow, I know if he leaves this world tomorrow, I know I’ve done everything in my power to bring him as much happiness as I can possibly do,” Wiles said
The moment was made possible by the Adaptive Surf Project, a Morehead City-based nonprofit that helps people with disabilities go surfing
Wiles described the moment she saw her son on a surfboard
“The adrenaline was so powerful, the overwhelming emotions were so indescribable that literally, I just started wailing out of nowhere,” Wiles said
Volunteer Cameron Thigpen held Chance up on the board. Thigpen said he was nervous because of Chance’s medical conditions, but said riding the waves with him had a profound impact
“I started crying. Everybody started crying. Not tears of like sadness. Not tears of joy. Tears of relief,” Thigpen said
Wiles said the moment meant more than she could describe
“Seeing him come in and officially seeing that dream come true, I could have never done that for him, but the Adaptive Surf Project did,” Wiles said
Wiles said she wants to use the experience to remind people to live life to the fullest because life is a gift and no one knows what day could be their last
Videos of Chance posted by the Adaptive Surf Project and by Wiles have reached around nine million views collectively, Wiles said
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