Action on Hearing Loss Logo
    Total results:
    Search
      Total results:

      Living with dual sensory loss: Carla and Cameron’s story

      Norrie Disease is a rare genetic disorder, mainly affecting boys, that leads to blindness and, in most cases, progressive hearing loss as well. Other symptoms include autism and cognitive impairment.

      Mum, Carla, shares her son Cameron’s story of living with dual-sensory loss, and why research into hearing loss is so vital for Cameron.
      By: Carla, mum to Cameron | 15 November 2018

      As my son was born totally blind, it quickly became 'our normal'. Despite being told all the possibilities of additional needs Norrie Disease brings, one thing we never mentally prepared ourselves for was for Cameron to progressively lose his hearing. Over the months, we noticed a change in his behaviour: going out in noisy crowded places became a huge problem and would quickly send him into a sensory-overload meltdown.

      It was difficult to manage his frustrations, and his severely delayed communication skills were showing no progress. After years of recurrent ear infections and traumatising pain, I began to notice certain sounds were somewhat painful to his ears. After being closely monitored by audiologists every 6 months, we decided to have grommets inserted - where it was then discovered that Cameron had completely lost his hearing in one ear at the age of 3. The grommets were completely life changing, helping to manage the pain and help keep his one hearing ear clear of fluid and congestion.

      Still, my son has to work ten times harder to locate sounds and process them compared to other children. He can’t see what is making the noise so doesn’t know where it is coming from or what it is, and his hearing is severely affected when there is too much background noise. Having a multisensory impairment (sight and hearing loss) has caused my son to have very complex additional needs, so much more than if he had just blindness or hearing loss alone. When one sensory loss accompanies the other, we feel the disability is far greater and much more difficult to overcome.

      Forum
      "Every day we live in fear that the progressive hearing loss will affect his other ear."
      Carla

      When people learn about Cameron’s blindness, the first thing that everybody says, without fail, is how his 'super senses' will compensate for his vision, especially his hearing. But this isn’t the case. For Cameron, the most important sense is touch. Having dual sensory loss can prove difficult at times: he is still unable to form communication and language skills and we have to adapt our surroundings and environment to help him reach his full potential.

      Every day we live in fear that the progressive hearing loss will affect his other ear before he develops the skills to talk - something I so long to hear. It’s a ticking time bomb in the corner of the room, just waiting to happen.

      Research into hearing loss is so important to our family. Finding a treatment that works for Cameron would open up a whole new world to encourage communication skills. His smile lights up his face when he hears his favourite music or his sisters’ voices, but knowing that this one vital sense is already being taken away from him too soon makes us feel sad and frustrated. No one wants their child to feel isolated, living in a world where they cannot see and they cannot hear. We want to find a way to stop that, so that Cameron’s smile never fades.

      Find out more

      We depend on your donations so we can fund the best research into hearing loss around the world. Donate today and help us continue our vital work into hearing treatments, so that people like Cameron and his family can live life to the full again.

      You can find out more about the research we’re funding in our biomedical research section. If you’re interested in finding out more about the latest developments in hearing research, sign up to receive our Soundbite newsletter. It’s a monthly email, filled with the latest news about hearing and tinnitus research.

      For more information about Norrie Disease and support available you can visit The Norrie Disease Foundation’s website.

      Cameron
      A picture of Cameron who is living with dual-sensory loss. He is blind in both eyes, and deaf in one ear.

      Recent Posts

      The cuticular plate: the foundations of hearing

      Tiny sensory cells in the inner ear, called hair cells, are vital for our hearing. One particular part of the hair cell, the cuticular plate, has recently been the focus of research by a team at the University of Virginia School of Medicine. The structure was found to play an important role in hearing and it was discovered that defects in it may lead to hearing loss.

      By: Dr Marta Narkiewicz
      15 April 2019

      Identifying antibiotics that are less toxic to the ear

      We funded a consortium of researchers from universities and industry to identify antibiotics, which are less toxic to the ear, but that are still effective in fighting life-threatening bacterial infections. The results have now been published in the journal Scientific Reports. Our Translational Research Manager, Dr Carina Santos, tells us more about their work.

      By: Dr Carina Santos
      15 April 2019

      Stress-relieving products to make life easier

      To mark Stress Awareness Month, we’ve selected our top stress-relieving products for people with deafness, tinnitus and hearing loss. We’ve a practical solution for every situation, to reduce anxiety and give you, or a loved one, a renewed zest for life.

      By: Sally Bromham
      14 April 2019

      Kick starting new research

      Our Flexi grant helps researchers kick start new lines of research. We’re awarding funding to three new projects that could lead to new diagnostic tools, a gene therapy for a specific type of inherited deafness and pave the way for clinical trials of treatments to prevent hearing loss caused by the anti-cancer drug cisplatin. Our Executive Director of Research, Dr Ralph Holme, tells us more.

      By: Dr Ralph Holme
      11 April 2019