Pasco High student seeks to boost awareness of genetic disorder

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DADE CITY — Linnea Haga devotes her free time to public speaking and horseback riding even though she faces a genetic disorder affecting her vision, hearing and balance.

The 16-year-old honor student in the Cambridge program at Pasco High School talks about that challenge, but never lets it stand in her way, when she speaks at fundraisers and conferences. Haga was diagnosed about 3 years ago with Usher syndrome.

"There's not a lot of research about Usher syndrome," said the Pasco High junior. "And they don't have a cure."

Born profoundly deaf, Haga learns with the aid of cochlear implants, surgically installed components that stimulate the auditory nerve and replace the function of the cochlea.

Afflicted with retinitis pigmentosa, the visual component of Usher syndrome, she sees the outside world through the boxlike scope of tunnel vision. Her eyesight may deteriorate further in the future.

She navigates her studies by sitting at the front of her classes, and by using the closed-caption feature on audiovisual equipment.

"There are ways to delay the effects of Usher syndrome," she said. "They can't put a stop to it."

And Usher syndrome has not put a stop to Haga and her dreams. Holding a 4.2 grade-point average, she has a special love of science and art and has claimed honors in every art competition she has entered.

"I was always a little artsy, always doodling," she said. "Art gives people a medium to express whatever they want to. You can tell a lot about a person by their art."

Haga recently started taking horseback-riding lessons at two different locations, and credits her sense of balance and working with her practice horse, Ryder, for her riding skills. She senses the horse's movements and leads him accordingly. While riding — she recently joined the Lange Farm Interscholastic Equestrian Association team — she wears headbands over her cochlear implants to keep them in place.

Haga also has mastered the art of public speaking. Both she and her mother, Miriam Haga, have spoken on the subject of cochlear implants at conferences, and are advocates on the subject of Usher syndrome.

"I have been a PST (patient support team) member for MED-EL Corp., the company that makes the CI's Linnea uses for hearing," said Miriam Haga. "It pretty much means sharing our cochlear implant story to inform, educate and support others. When Linnea was a baby getting ready to go through this journey, we found a lot of comfort in meeting other parents that had been there. We enjoy doing the same for others now, to inspire and to be able to show such a success story that Linnea really is."

Now, both are working to raise awareness for those dealing with Usher syndrome.

"We were introduced to a new family — the Usher and vision-loss family," said Miriam Haga. "We joined the Usher Syndrome Coalition. It has been great support. Again, it helps being around people in the same situation. My goal is getting the word out about Usher Syndrome since it's so unusual. We need a cure."

In February, Linnea spoke at a Pasco High fundraiser intended to facilitate her attendance at the Usher Syndrome Coalition conference this July in Chicago. It raised $3,900.

"Awareness is important, so people understand," she said. "Awareness will lead to more research and funds."

Sarah Johansen, the Cambridge School counselor at Pasco High, cites Haga as an achiever and a role model.

"Linnea goes above and beyond," Johansen said. "Her dedication and commitment, her positive attitude and kindness, make you want to reach out and help her — not that she needs it."

Currently planning a career in either the arts or the medical field, Haga has advice for other students with similar challenges.

"Use the accommodations there to help you," she said. "There is no shame, and it's not an inconvenience. People at this school have gone out of their way to help me."

Her parents are proud of their daughter's accomplishments.

"She moves every challenge in her way," said Raymond Haga, her father. "She amazes me every day."

"As a mom of Linnea, I'm so proud of who she's become," said Miriam Haga. "She's so intelligent and deals with a lot more than your regular teen. She's a role model and so inspiring."

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