Waikiki surf session fulfills ailing boy’s wish after his diagnosis of a genetic disorder
Connor Shipp, a 9-year-old boy from Reno, Nev., is battling a rare genetic disease called Adrenoleukodystrophy, or ALD, which causes deterioration of the white matter in the brain.
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Connor Shipp, a 9-year-old boy from Reno, Nev., is battling a rare genetic disease called Adrenoleukodystrophy, or ALD, which causes deterioration of the white matter, or myelin, in the brain. The disease, which affects about 1 in 18,000 people, has taken Shipp’s hearing, rendered his speech nearly impossible for others to understand and taken away the sight in one eye.
It’s also stealing time from him.
But it didn’t stop
Connor from achieving his greatest dream on Dec. 16, which oddly enough for a kid from a landlocked state was to go surfing.
“After we got his diagnosis in September, he started telling us that he’s wanted to surf since he was 6 years old, ” said the boy’s father, Jason Shipp, who along with other family members marked the occasion by donning a “Catching Connor’s Wave” T-shirt. “We thought it would be tough given his physical condition, but we knew Make-A-Wish would find a way to figure it out.”
The nonprofit Make-A-Wish, which grants wishes to critically ill children, partnered with Sea Inspiration, a Hawaii-based nonprofit, to make it happen. Sea Inspiration’s main mission is to educate people about the ocean, but it also specializes in bringing healing adventures, mostly ocean-based, to children, military members and veterans with medical challenges.
Sea Ispiration founder Ray Hollowell, a professional cameraman and producer of ocean-based content including extreme sports programming, had a near-death experience in 2002 at the Banzai Pipeline on Oahu’s North Shore. Upon recovery, he wanted to pay it forward by working to educate people on “how much the ocean needs us and how much that we need the ocean and all its healing proprieties.”
“We donate our programming all over the world,” Hollowell said. “We do ocean adventures and educational programming with a purpose and the occasional porpoise. It’s about inspiring and teaching children and adults to be good stewards of our ocean environment. The ocean is the blue heart of our planet. “
On the same day Connor’s wish came true, Sea Inspiration also helped Marty Mimmack go for a swim in Waikiki’s healing waters. Born without arms and with a leg that is shorter than the other, Mimmack was the 1970 March of Dimes National Poster Child.
As a child, he starred in a March of Dimes film meant to increase awareness of individuals with disabilities and their many capabilities.
Mimmack, who has worked in philanthropy most of his life, said being in the water allows those with disabilities to gain confidence. He credits a childhood snorkeling experience with making him more adventurous and teaching him how to regulate risk — skills that have served him well throughout his adult life.
“It’s so important to give people the opportunity to participate in what’s available to everyone else,” said Mimmack, who got to see Connor surf. “We are you and you are us.”
Connor’s family used sign language to let him know what was happening before he paddled out on a large board with James Donnelly holding him tight.
“Surfing is one of our top wishes along with seeing dolphins, whales and going to luaus and Pearl Harbor,” said Donnelly, who works in development for Make-A-Wish Hawaii. “Last year, we granted wishes for 1,274 people from all different states and countries. It’s always very special.”
Connor’s experience was no exception. A vibrantly hued rainbow bridged the heavens as the two rode into the surf surrounded by volunteers to catch them if they fell. The boy cried when his face got wet but moments of laughter rang out as the waves carried him forward.
Sea Inspiration captured those moments in photos and videos.
“He’s totally stoked,” said Jason Shipp. “This is amazing for him. It’s probably the last time that he’ll be able to do something like this. It’s also probably our last family vacation together.”
Kehaulani Kam, director of cultural services for Kyo-ya Hotels &Resorts and Marriott Waikiki, said it was fitting that Connor was introduced to the Pacific Ocean and surfing in Waikiki, which means “spouting waters” and was considered sacred to Native Hawaiians.
“The waters of Waikiki have always been looked at as healing waters for centuries,” Kam said. “It was a place where the alii came to heal and relax. It would really lighten their hearts and give them a sense of security.”
Ten members of Connor’s extended ohana accompanied his five-member nuclear family on this once-in-a-lifetime trip. His grandmother Kim Shipp said none of them “would have missed it for the world.”
“We only got the news about Connor’s diagnosis about three months ago. It’s progressed so fast, so it’s a blessing that we can have this time,” she said. “We don’t want to miss a moment. We’re just trying right now to make every day that we’ve got a ‘Happy Connor Day.’”
While the inevitable cognitive deterioration that accompanies Connor’s disease may cause him to forget the magic of his trip to Hawaii, Kim Shipp said the family will always remember Connor’s surfing experience and his first swim in the Pacific Ocean, which took place two days earlier off the Sheraton Waikiki.
“We’ll never forget this,” she said. “We will have the memories with him and be able to tell and share.”