Sarah Gorden

To Sarah Gorden, being able to hear her husband say “I love you” is a miracle. Four years ago, Sarah had to undergo a surgery which took her hearing. Living with Neurofibromatosis Type Two (NF2), she had tumours on both sides of her brain, affecting both her hearing and balance. When the larger of these two tumours had to be removed, she had to sacrifice her only remaining hearing. Stepping into a now silent world was difficult, but there was hope.

“I connected with other NF2 patients through an online support group called the NF2 Crew,” Sarah explains. “It was through this group that I learned of the House Research Institute (HRI) in Los Angeles, California.” The House Research Institute specializes in disorders affecting the ears and hearing. They are one of very few centers in the world that specialize in NF2. At HRI, they have developed a specialized hearing implant called an Auditory Brainstem Implant (ABI). The implant is specifically for people with damaged auditory nerves. When the NF2 tumours are removed, the auditory nerve is destroyed. Devices like hearing aids or cochlear implants are no longer an option. The ABI bypasses the auditory nerve and stimulates the brainstem to restore some sense of sound.

The ABI was placed at the same time as the tumour was removed. Two months after her surgery, Sarah returned to Los Angeles to have the device activated. “When the audiologist flipped my ABI on and began talking… ‘Testing one, two, three, popcorn, baseball, hot dog’ I was amazed that I COULD HEAR HIM!” Sarah recalls. “At first, the sounds were artificial sounding and peoples’ voices sounded like they had been inhaling helium. With time, this got better and everything started to sound more natural.” With a lot of practice, Sarah now does very well with her ABI. “Although it did not restore my hearing, I am able to hear things that I never thought I would get back. I am especially grateful to be able to hear my husband’s voice and am relearning how to hear some music.”

Unfortunately, during the surgery, Sarah’s right facial nerve was traumatized, leaving her unable to move half of her face and to smile. Having her ability to smile and show emotion taken away has been very difficult for her to cope with. “Despite it all, I try my best to face each day thankful for what I still have.” Since 2008, Sarah has been participating in an NF2 natural history study at the National Institutes of Health (NIH) in Bethesda, Maryland, USA. The purpose of this study is for the researchers to learn more about NF2 in hopes of finding better treatment options.

Sarah has many other tumours throughout her brain, spine, and peripheral nerves and has undergone numerous surgeries. Sarah has a love for animals, especially her beloved dog, Bailey and her two cats, Oliver and Maddie. “They bring me a lot of joy and help me cope on the rough days.” She enjoys graphic design, photography, the outdoors, exercising and spending time with her husband, Hans, family and friends. She volunteers her time as the graphic designer for AdvocureNF2, a non-profit organization advocating for the NF2 community. Sarah tries to live life to the fullest, one day at a time and her motto is “Never give up hope!”