San Diego

Your Corner: Student With Rare Genetic Disorder Has Inspiring Lesson to Teach

Stormi Link was born with a very rare genetic disorder called Multiple Pterygium Syndrome

For someone named Stormi, a San Diego student has a surprisingly bright outlook on life.

And that's saying something, considering what this 24-year-old has dealt with in life.

Stormi Link was born with a very rare genetic disorder called Multiple Pterygium Syndrome, which can cause webbing of the skin at the joints, making it difficult for a person to move. It's rare. The National Institutes of Health reports the frequency of the disorder as unknown.

"I'm the only person with it in the whole world," Link said. "So, I'm really tiny. I walk in a squatting position."

She says she is stared at everywhere she goes, but that it doesn't really bother her. It also never bothered her when people told her what she can't do.

"It's made me just go after what I want," she said.

It's why she's now going to college, studying graphic design at the Art Institute of California San Diego, paying her own way, and even driving herself to class.

That desire to prove other people wrong, in addition to her faith, is also what led her to take a trip to Africa recently. Link said she felt called to go to Uganda where she worked to change a stigma towards the disabled.

"Because in Uganda, people are looked at as a curse, and they're treated lower than animals," she said. "Our emphasis was to teach them that people with disabilities are normal."

She says she was the perfect person to change that attitude because she's living proof of defying other people's expectations.

"They were like, 'Oh, you drive. You go to school. You have a family.' And I was like, 'Yes,' and it's possible for these people to do what I'm doing," she recalled.

For Link, one of the most powerful ways she has of reaching people is through art.

A painter all her life, she said holding a brush is the one thing that she could always do the same as everyone else.

On that trip to Uganda, Stormi said she met a girl who couldn't hold a brush, so she just placed the brush into the girl's mouth.

"And she had the biggest smile, and she felt included, which was the whole emphasis of the trip," she explained.

She knows first hand, the power of painting.

"I'm in pain 24/7, but when I paint, I just forget all about it," she added.

Link said she wants to keep painting. She wants to go back to Africa. She wants to finish school. She wants to continue to do whatever no one else expects.

"So, it's like people around me are just like, 'Well, what's next? Like, what can't you do?  And I'm like, 'Exactly.' I'm just a normal person that just looks different," she said. "This is me. I embrace it."

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