Family Stories

Content of the Family Stories and Blogs is the personal views and experiences of the authors and should not be read as action or advice from the Norrie Disease Foundation.

Ethan smiling

How our son has given us a new perspective on life, by Theresa Peacock

Ethan with his mum Tee, Dad Neil and brother Jasper Just recently I read a book called Wonder, written by R.J Palacio. The story is about a boy who was born with a rare facial deformity and what everyday life is like for him. It is written from his perspective and also from the viewpoint of some of those that are close to him. It is a wonderful book and I would recommend it to everyone to read. The book ends with these words. “Thank you Auggie,” she answered softly. “For what?” “For everything you’ve given us,” she said. “For coming into our lives. For being you.” She bent down and whispered in my ear. “You really are a wonder, Auggie. You are a Wonder.”

The power of these words made me cry. I completely understood how the mother in the story felt and these words pretty much sum up how I feel about my own son. When you decide to start a family your expectations are that all will be fine and life will take the normal path of cute baby transitioning to terrible toddler to starting school and so on. You expect life to be ‘normal’ and for nothing out of the ordinary to happen. What you don’t expect is to be told by a consultant that your baby has a disability. Hearing the news that our son could probably see nothing was gut-wrenchingly, heart-breaking. The shock and sadness of that moment is something that I will never forget, but from that moment on I was determined that the hopes and dreams we had for our son would remain whatever the future held.

Ethan is very fortunate amongst those in the Norrie community that we know in that he has got some useful vision, and so far hasn’t had any other issues related to the disease. He started Grammar school in September and is doing really well, we have had some challenges, but he has a great supporting team in his LSAs and the VI team. The amount of braille being produced is incredible!

Having a child with any sort of disability can be really tough. It can be isolating, heart-breaking, challenging, exhausting and emotional. It can also be full of moments of joy and wonder. It often brings out the best in the people around us. Ethan has opened us up to a whole new world of wonderful experiences and incredible people. He has given us a new perspective on life. He amazes me every day and I am so thankful that he came into our lives, he really is a wonder.

The Norrie Disease Foundation funds braille parties to teach the fundamentals of this essential life skill in a fun and relaxed setting. Braille can be taught from a very early age and enables communication with peers, family and friends as well as independence.

Cameron’s Smile – Progressive Hearing Loss

Cameron playing outsideAs my son was born totally blind, it quickly became ‘our normal’. But despite being told all the possibilities of additional needs Norrie Disease brings, one thing we never mentally prepared ourselves for was progressive hearing loss. 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 audiology every 6 months, we decided to insert grommets – where it was then discovered he had full hearing loss in one ear at the age of 3.

When people learn about his blindness, the first thing that everybody says without fail, is how his ‘super senses’ will compensate for his vision, especially his hearing. But for Cameron the most important sense is touch. Unfortunately 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 is a ticking time bomb in the corner of the room just waiting to happen.

The grommets were completely life changing, helping to manage the pain and help keep his one hearing ear clear of fluid and congestion.

My son has to work ten times harder to allocate sounds and process them. He can not see what is making the noise and his hearing is severely affected when there is just too much background noise. Having a multi sensory impairment has caused my son to have very complex additional needs, so much more than just blindness or hearing loss alone.

When one loss accompanies the other, we feel the disability is far greater and much more difficult to overcome.

The Norrie Disease Foundation is developing a patient registry to support pioneering research into the Norrie disease hearing loss.