1. Education

Pasco High student seeks to boost awareness of genetic disorder

Eleventh-grader Linnea Haga, a Cambridge student at Pasco High School in Dade City, works on a painting in her art class. Haga suffers from Usher Syndrome, a genetic disorder that affects her vision, hearing and balance. An honors student who excels at art and science, she also is an equestrian and speaks publicly on Usher Syndrome and cochlear implants.
Published Mar. 12, 2017

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."


  1. Colleen Beaudoin is selected Pasco County School Board chairwoman for 2020, and Allen Altman is named vice chairman. JEFFREY SOLOCHEK  |  Times Staff
    Altman chosen as vice chairman.
  2. Gov. Ron DeSantis speaks at pre-legislative news conference on Tuesday Oct. 29, 2019, in Tallahassee, Fla. (AP Photo/Steve Cannon) STEVE CANNON  |  AP
    He’s got a new voucher proposal, as well.
  3. Pasco school bus drivers are among those school-related employees who would get a 3.25 percent raise under a tentative contract agreement for 2019-20.
    District, union attention now turns to teacher contracts.
  4. Teacher Kate Newell watches seventh graders Aaron Roxberry and Jacob Iovino practice the slope-intercept formula in one of her weekly visits to their Bayonet Point Middle algebra class, which Newell usually teaches remotely. JEFFREY SOLOCHEK  |  Times Staff
    A roundup of stories from around the state.
  5. eSchool teacher Kate Newell holds a discussion-based assessment with eighth-grader Ariana Toro during a recent visit to Bayonet Point Middle School. Newell leads the math course remotely most days, but comes to campus at least once weekly to give her students some extra attention. JEFFREY SOLOCHEK  |  Times Staff
    Principals increasingly turn to virtual instruction to fill their vacancies.
  6. Damian J. Fernandez, center, is introduced Monday as the new president of Eckerd College. He will succeed longtime president Donald R. Eastman III on July 1. SCOTT KEELER  |  Tampa Bay Times
    Damian Fernandez, 62, will succeed president Donald R. Eastman III, who steps down June 30 after leading the school for 19 years.
  7. The Florida Department of Education has approved another alternate assessment for third graders to demonstrate they read at or above grade level.
    The state also reminds schools to let those who struggle that scholarships for help are available.
  8. Trump supporters yell and show the middle finger at hecklers during Kimberly Guilfoyle's speech in the University Auditorium at the University of Florida on October 10, 2019. Guilfoyle spoke about her childhood as a first-generation American, her experiences as a lawyer and her support for the Trump family.  CHRIS DAY  |  Chris Day
    Student senator Ben Lima explains why he’s pursuing the charges against Michael Murphy.
  9. A fledgling movement of parents and community members in Hillsborough and Pinellas counties are speaking out about sex education in public schools. They say the curriculums are not explicit enough. And they worry that kids don’t have enough information — or that they get it too late — to protect themselves against the risks of sexual intimacy. [Shutterstock] SHUTTERSTOCK
    A roundup of stories from around the state.
  10. FILE - In this Aug. 1, 2019, file photo, Donald Trump Jr. speaks before the arrival of President Donald Trump at a campaign rally at U.S. Bank Arena in Cincinnati. (AP Photo/John Minchillo, File) JOHN MINCHILLO  |  AP
    University of Florida student body president Michael Murphy received a resolution for his impeachment Tuesday. Then the state’s Republican Party started an online petition and fundraiser.