Cassie McElwain is a 13-year-old with alopecia areata (AA).
That means people stare at her in public, says the Oakview student with no hair on her body except a little ‘peach fuzz? on her head.
AA is an autoimmune disease where a body’s white blood cells attack hair. There’s no cure, though it’s not life-threatening and usually causes only small patches of baldness.
With help from her dad, Randy, an avid athlete, she’s raising awareness about the disease and funding for research. The pair created Cassie’s Crawl, an event where Randy is attempting to swim continuously for 34 miles across Lake Erie’from Long Point, ON to Erie, PA in a record time for the route.
AA is a tricky disease that can strike at any moment and produce varying degrees of hair loss ? something that can be difficult for anyone to cope with. But not for Cassie, says her dad.
‘She’s very confident and very proud of who she is. She’s a bright young lady,? Randy said. ‘She took it very well in stride.?
The family knew Cassie had AA since she was about two, but until midway through elementary school, they treated her small bald patches with topical ointment to regrow hair.
Then, at the end of fourth grade, ‘it came out in droves,? said her dad.
Now going into eighth grade, Cassie’s hair has never grown back.
She said it was sad to lose her hair, ‘but I didn’t really care because all my friends were like, ‘Oh, you look so cool!??
The 13-year-old has four wigs but simply chooses not to wear them.
Her dad said, ‘We were about a week away from school and I said to her, ‘If you wear your wig to school, nobody’s going to know you have alopecia unless you want them to.? And she said, ‘Well, what happens on Friday when I don’t feel like wearing it???
And so, she didn’t wear them any day. She says her wigs are in a box stashed away in her closet.
Now, she’s giving a ‘thumbs up? to her dad for swimming for the National Alopecia Areata Foundation.
Randy’s already attempted one trip early last month, but after a quarter of the way through the trip he had to stop because of the weather. Three other swimmers have successfully made the same trip, so Randy’s goal is not just to finish but to do it in record time, and high, head-on waves meant that trip would take 25 hours instead of 16.
‘I was nowhere near done swimming but I had expended much more energy just to keep pounding through these waves. I didn’t know how long that was sustainable,? he said.
Randy already has the record for a similar but shorter route across Lake Erie, and finishing the trip sparked the idea for Cassie’s Crawl.
‘I did that trip in some pretty bad conditions also. I had five-foot waves coming from the side, which is a little bit easier than head on waves this time (in August),? he said.
But when he finished on the beach with spectators and cameras waiting, he thought, ‘something more should have come from this.? There began Cassie’s Crawl.
Randy says he’s like to try the swim again, as long as the weather cooperates and he has enough volunteers to man a motor boat and support kayaks. They provide nutrition for him during the trip and medical support, if needed.
During the August attempt, Randy and his kayaker nearly lost the motor boat following them because of the nasty weather. He said the swim started just after 9:30 p.m., Tuesday, Aug. 3 and the lake and skies were completely calm.
‘Then the lights went off and the washing machine turned on,? he said.
After the first half hour, waves started pounding Randy and the kayaker head on, and were getting bigger and more frequent, he said.