By Ethan Rampersaud
Photo Credit: Carolyn Graham
Usher syndrome is a rare genetic disorder that slowly deteriorates an individual’s sight and hearing, affecting about 50,000 people in the United States. The disorder can render one deaf and can gradually damage their vision until their vision is diminished. One of our own, Cambridge student Linnea Haga, has been affected by this syndrome.
As stated before, the disease affects her hearing. Without being able to hear, she has to rely on a hearing aid to listen to teachers and peers. They in turn are required to understand and accommodate her hearing issue. To her, she feels no different than any other student. In her words, Usher Syndrome, “…just makes life different.”
After high school, she is deciding whether to enter the fields of medicine or of art. She is interested in a medical career, since she wants to study topics such as anatomy and physiology. However, she is also interested in entering an art related career, which seems to be evident, as she has demonstrated her ability to produce and showcase excellent and awe-inspiring artworks countless times. She also expressed an interest in animation, another form of art through fluid movements and dialogue.
In her life, Linnea is inspired primarily by two individuals. Stephen Hawking, a famous cosmologist known to have ALS (Lou Gehrig’s disease), who has shown to her and many others that against all odds, people can triumph. The second person is a girl named Bella, who also has Usher syndrome. She is also an artist and tries to spread awareness of Usher Syndrome through her art, since it is a little-known disease that not too many people are aware of.
As stated before, Linnea has a passion for art. The time and dedication can be observed, as there is concrete and solid detail placed into her paintings, rather than an abstract and generalized creation that would spawn from an uninspired and impatient mind. She also enjoys horseback riding. In fact, she had received 2nd place at a horse show. She also loves playing tennis, a sport her entire family participates in, and enjoys reading.
In school, her favorite subjects are biology, art, and history. Linnea is currently an Honor Roll student. In art, she believes that she has made great strides in improving her artistic style this year.
If Linnea had to change one thing in the world, a tough question for many to answer, she would want to make people more empathetic. She would want others to understand another’s point of view, so they can better respect their beliefs and opinions, which would make it easier for people to be open to collaborate, and create solutions instead of problems.
Linnea believes that in order for people to understand her situation better, there needs to be more awareness. As it has been stated before, Usher syndrome is not seen as an important subject, since it is a rare case. Therefore, no one can understand the genetic disorder’s devastating effects. More education is necessary to understand the disease first before they can understand the struggles of the people with this disease.
The inspirations for Linnea’s art originate from the styles of the modern and expressive Ulrich Lamsfuss and the precise and scientific style of polymath Leonardo da Vinci. When asked about her favorite piece from any artist, she was not sure. She saw that many artists, including da Vinci and Lamsfuss, have produced quality pieces that have stolen the eyes of many observers.
Linnea is no different from any of us. It is true that she may have a genetic disorder that may distance her from people that are able to hear and see well, but she is a high school student who is finding her way around the labyrinth of the world to realize her dreams and aspirations in the end. I implore everyone to come out and support Linnea, her family and the other people who struggle with Usher’s syndrome this Friday at the Cambridge Usher Awareness Syndrome Event. Someone is part of a community, and a community is a part of someone. In the words of actor Jet Li, “I believe the world is one big family, and we need to help each other.” So let us come together on Friday, February 10th in support of Linnea and her family.