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Fundraisers to help Coupeville woman with a rare disorder

A woman with a rare genetic disorder is seeking support from the community.

After eight months of visits to the doctor’s office, Coupeville resident Jacquelynn McCarthy was diagnosed with Carney Complex in 2016.

McCarthy’s unusual condition causes benign tumors to grow in the left atrium of her heart. Even after removal, there’s a chance they will return.

The soon-to-be 36-year-old is facing her third surgery in four years and needs help covering her living expenses. She will not be able to work for at least six weeks after the surgery, though the recovery time could take longer.

McCarthy is an esthetician at the Seaside Spa and Salon in Coupeville. Her boss and the owner of the salon, Aaron Wiley, is organizing the fundraiser on Facebook for McCarthy.

Three weeks ago, McCarthy called Wiley to tell her that another tumor was discovered in her heart.

“It was one of the hardest phone calls I think I’ve ever actually been on,” Wiley said. “The despair in her voice was profound.”

Wiley asked what she could do to support McCarthy, and a plan was hatched.

“She said, ‘I want to stay here. I love my life on Whidbey Island. I love my life, I’m so happy,’” Wiley said.

McCarthy moved to Whidbey from Georgia on a whim last summer after visiting a friend on the island. She had just had her second open-heart surgery and loved the view from the wharf in Coupeville.

“I called my mom and I was like, ‘I think I found where I’m going to live for the rest of my life,’” McCarthy said.

It was an opportunity for McCarthy to set down roots in a new place. Her East Coast family questioned why she wanted to make such a big move but were also supportive.

McCarthy explained that she felt like she was on “borrowed time,” and wanted to live her life on her own terms.

“I want to be independent,” she said. “As long as I have to live with this, I want to show people how to live a life dealing with something like this.”

There have only been 750 documented cases of Carney Complex since 1985.

“They tell you the tumors can come back, sometimes they don’t,” McCarthy said. “So you kind of just cross your fingers and hold your breath.”

The new tumor in her heart is currently only a few centimeters but will cause complications if not removed.

McCarthy explained that a new technology is being used to target the tumors with lasers.

She is waiting to hear back from her surgeon, who wants her to come to UW Medical Center for the operation.

One of her goals with the fundraiser is to be able to raise enough money to purchase a car to drive to the doctor’s appointments on the mainland. As of press time, McCarthy’s fundraiser has raised just over $2,600, and she was in the process of buying a vehicle.

“You feel a little selfish when you’re asking for help,” she said.

“I think it’s time for me to think about myself.”

The aim is to raise $20,000, Wiley explained. That money will help with McCarthy’s expenses while she recovers and then provide “a little cushion” in case more tumors develop in the future.

“The biggest thing for me was just hearing how desperately she wanted to stay here and how happy she is here and how this thing just keeps putting bumps in her road, but she’s bound and determined to stay here,” Wiley said.

Despite having to live with a rare disorder that doctors don’t know a lot about, McCarthy remains upbeat.

The experience has taught her how to advocate for herself, both in the doctor’s office and out in the community. She is also continuing to work until her surgery.

“Mental health is a big part of recovery and keeping a positive attitude,” she said.

Separate from the fundraiser, McCarthy will be hosting a silent auction, also on Facebook. She approached South and Central Whidbey business owners and asked them to chip in prizes. Bidders will have the chance to win services from the Seaside Spa and Salon, gift certificates, dinner reservations, jewelry and even a miniature “sixtel” keg.

The auction will run Nov. 1-3. It will end on the day of McCarthy’s 36th birthday.

Her Facebook page and fundraiser is fittingly titled “Jacqui’s fight against Carney Complex.”

“I’ve just always been so determined,” McCarthy said. “It’s just crazy that I like, talk about it out loud and I’m like, ‘Dang. You’re kind of a badass.’”

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