PORTLAND — When Whitney and Seabren Reeves of Brunswick found out their sons Seabren, 11, and Sondre, 9, had a rare kidney disease, they didn’t know where to turn for support. But three years ago they made a trip to Camp Sunshine in Casco, which offers children with chronic illnesses and their families free year-round camp sessions at Sebago Lake.
“It is the most magical place ever,” Whitney Reeves said Saturday, prior to the 2020 Portland Polar Dip, Camp Sunshine’s annual fundraiser, at East End Beach. “You end up finding people you can bond with like no other.”
The Reeves boys have Alport Syndrome, which damages tiny blood vessels in the kidney and can lead to loss of hearing, sight issues, kidney disease and kidney failure and impacts between 1 in 5,000 and 1 in 10,000 people, according to the Alport Syndrome Foundation.
“We have never met a family from Maine with Alport. That is how rare it is,” said Seabren Reeves.
Whitney Reeves said her family was lucky to get the diagnosis early.
“We were blessed we found about early because classically with Alport Syndrome, you don’t find out about it until a teenage boy is in kidney failure. Boys are projected to lose their hearing by 15 and need a kidney transplant by 20,” she said.
Camp Sunshine has allowed her to connect with parents of other kids dealing with rare diseases and has given her children a chance to experience summer camp for the first time.
“They can just be themselves there,” she said.
The camp, which offers children a variety of recreational and arts and crafts offerings and educational forums for parents, has been “life-changing,” her husband said.
Since 1984, the camp has hosted more than 50,000 family members from all over the world.
“Camp Sunshine is one of the only programs out there that is designed to benefit all members of the family,” said Kayley Walker, Camp Sunshine’s communications and event coordinator.
It wouldn’t be able to hold its 22 camp sessions without fundraising events such as the Portland Polar Dip, Walker said.
“It is a fun and relatively easy way for everybody to participate. It’s been a good tradition and a good way for our families, staff and volunteers to come together. We like to say a few seconds of cold, while bad, is nothing in comparison to what our families face on a daily basis. I think that resonates with our supporters,” Walker said.
As of Monday, close to 140 Polar Dip participants had raised $34,400, well over the $20,000 goal.
The chilly waters didn’t faze Eleanor Snyder of Portland and David Rowe of Westbrook, who both found the water not as cold as they expected.
“I am not saying it was enjoyable, but it was refreshing,” Rowe said.
Rich Baker of South Portland took a dip with his daughter, Piper, 10. Baker said he had heard good things about the Camp Sunshine organization and wanted to help.
“It looked like a good cause,” said Baker, who, as a participant in the National Resource Council of Maine’s Polar Bear Dip and Dash, is no stranger to polar dips.
Pete Bissell, co-owner of Bissell Brothers Brewing, a sponsor of the event, was also a first-time participant in the Camp Sunshine event.
“We have worked with Camp Sunshine over the years and we think it is a great cause,” said Bissell, who dipped with his father Jensen and sister-in-law, Hester.
For more information about Camp Sunshine visit campsunshine.org.
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