SLO teen has rare, painful disease. Former pro athletes, local celebrities want to help

What do a local drag queen, a former Los Angeles Dodgers pitcher and a San Luis Obispo High School math teacher all have in common?

Each will be part of a celebrity softball game Aug. 10 at Sinsheimer Park to benefit a 16-year-old San Luis Obispo High student with a rare genetic condition.

Clio Nelson has suffered from Cowden Syndrome since she was 8 years old. That’s when a massive growth on her left arm formed after she was hit by a ball in a dodgeball game.

The swelling hasn’t gone down since, and it can’t be treated surgically, resulting in debilitating pain that comes and goes.

Also known as Cowden’s disease, the condition causes chronic pain from tumor-like vascular formations that grow randomly in the body.

Nelson is also at risk for contracting three or so potential cancers, and currently is undergoing testing for thyroid cancer.

“I’ve been medically weird since I was 8 years old, and never had the chance to be a normal kid,” Nelson said. “I’ve come to terms with that and even my own mortality, but I do need help staying afloat.”

Softball game will help raise money for service dog

The softball game, to be held at 3 p.m. Aug. 10 at Sinsheimer Park in San Luis Obispo, will cost $25 for general admission in hopes to raise $25,000 for a service dog. Nelson’s family hopes to sell 800 tickets to reach the goal.

The local celebrity players include former Los Angeles Dodgers pitcher Ted Lilly; former Oakland As pitcher Tim Kubinski; former NFL player Mark Anelli, who played for the San Franciso 49ers; Cal Poly baseball coach Larry Lee; and local leaders including Digital West CEO Tim Williams, San Luis Obispo Chamber of Commerce CEO Jim Dantona and former San Luis Obispo Councilman Dan Rivoire, a vice president at iFixit.

Former Chicago White Sox player and manager Robin Ventura is also expected to play, said Angela Nelson, Clio’s mother, noting it’s “98 percent” certain he’ll attend.

Clio Nelson suffers from a rare disease, Cowden Syndrome, and a celebrity softball game will help raise money for a needed service dog to help her. Nick Wilson

The celebrity umpire will be Victoria, a drag queen involved with the Gay and Lesbian Alliance of the Central Coast, who goes only by one name.

“Victoria knows little about softball, but she will be great about entertaining the crowd,” said Angela Nelson, Clio’s mother. “This will be a really fun game that brings together people from throughout the community.”

The service dog, anticipated to be a Labrador or golden retriever from Arroyo Grande company Doggy Does Good, would help in case of an emergency in which the dog could alert others and provide comfort for Nelson, who battles anxiety attacks as well.

Nelson is at risk of bleeding to death if she doesn’t get help quickly in a health emergency.

“The Nelsons already have living and medical expenses, and adding the $25,000 for the service dog seems like a huge burden,” family friend Loreli Cappel said. “It’s something we can actually help with.”

Nelson, who is unable to play sports because of her condition, will throw out the first pitch and has helped create the team names and uniforms.

The team names — the Mer-Corns (combination of “mermaid” and “unicorn”) and the Tiel Zebras — come from nicknames for Nelson, and the term “zebra” sometimes is used by doctors to refer to a rare disease, Angela Nelson said.

“The names and colors have connections to the condition,” Angela Nelson said.

A difficult diagnosis of a rare disease

It took multiple doctors’ visits over the course of three years to figure out that Nelson had an unusual disease that roughly affects one in every 200,000 people, according to the National Center for Biological Information.

Nelson later developed tumor-like growths on her feet, as well, which doctors were able to remove. But because of Cowden’s, she’s bracing for future masses forming throughout her body.

At any given time, Nelson can feel sharp pains so crippling she has had to take time away from school. Despite the challenges, she has earned As and Bs.

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Clio Nelson (left) suffers from a rare disease, Cowden Syndrome, and a celebrity softball game will help raise money for a needed service dog to help her. Nelson is pictured here with her mother Angela. Nick Wilson

Sometimes, it seems like an “invisible disease,” she said, because others can’t see what’s causing her pain.

Each year, the family takes trips to the Los Angeles area to meet with doctors. The Nelsons recently have visited a medical center in the City of Hope, a nonprofit research organization, several times over the past year, where they’ve gotten to know the physicians well.

Even though doctors removed formations from Nelson’s feet, they have advised against removing them from her arm because of the medical complications that would bring.

“I don’t wish what I have upon anyone, but I am who I am because of Cowden Syndrome, and I love who I am,” Nelson said.

A tight-knit, artistic family

Nelson also is active in local theater, and will be performing in the San Luis Obispo Repertory Theatre’s upcoming Little Mermaid production. Her future service dog, a puppy, will be trained to assist her in a theater environment, as well as in her college years.

She enjoys screenwriting, digital photography and graphic design.

“The service dog’s training would take 10 to 12 months to meet her needs,” Angela Nelson said. “It’s really specialized, and the dog would get used to the specific environments she’s in.”

Clio Nelson is hoping to get a permanent service dog to help her deal with Cowden Syndrome. Courtesy photo

Angela Nelson is a vocal and communications coach and stay-at-home mom with her two teen children.

Her husband, Patrick Nelson, owns and operates the company Single Source Solutions, a low-voltage cabling company for network, phone, sound and security cameras.

Food for the benefit softball game will come from Old San Luis BBQ and Splash Cafe, and the gates will open at 2 p.m.

The event is for all ages and will be serving alcohol.

Tickets for the event can be purchased at www.eventbrite.com by searching “celebrity softball game.”

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Nick Wilson covers the city of San Luis Obispo and has been a reporter at The Tribune in San Luis Obispo since 2004. He also writes regularly about K-12 education, Cal Poly, Morro Bay and Los Osos. He is a graduate of UC Santa Barbara and UC Berkeley and is originally from Ojai.