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.

Cam Standing

Cameron’s Smile – Determination pays off

Cam StandingI have always struggled with my mobility outdoors.

Being out in the open can often be nerve – wracking.

The acoustics are completely different to indoor spaces. There are lots more sounds to take in, which can often be confusing due to my one sided hearing loss.

I usually wear orthotic boots to support my ankles, as my muscles are extremely tight from toe walking, and as I walk I like to bounce for constant feedback, which obviously affects my balance. I rely on my wheelchair a lot.

But today, I showed hard work and determination pays off.

We went for a walk in the woods, along the stream. I held Mummy or Daddy’s hand the whole way, trailing fences and rails.

My heels were to the ground, giving me stability and control. Allowing me to walk the longest distance I have ever done.

I enjoyed hearing the beautiful sounds of the waterfall, dogs barking and the birds chirping in the trees.

The Norrie Disease Foundation is developing a Patient Registry to assist pioneering research into the  progressive Norrie hearing loss.

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.