Diagnosis: Norrie Disease
Cameron was born at 39 weeks 6 days, weighing a healthy 8 pounds 4 ounces, and he was ready to come home hours after his birth.
For the first six weeks, he had his days and nights around the wrong way and would barely open his eyes whilst awake.
One day the light shone through the window directly into Cameron’s eyes, showing what appeared to be yellow dots in his pupils. At six weeks he was still unable to focus on objects and didn’t seem to look at us.
We spent everyday for two weeks taking him to the doctors, talking to health visitors and professionals, expressing our concerns. “It will come,” they said. “You’re just being over protective parents.” That is what we were made to feel like.
By eight weeks Cameron was throwing up his feeds and losing weight. We took him straight to the doctor’s office and also expressed our concerns about his eyes.
I remember the doctor shining a light into his pupils. “He appears to have cataracts.” We were sent home with a referral to Bristol Eye Hospital.
Cataracts? I had never even heard of that before. So, of course, out came “Doctor Google®,” and I was reassured an operation could correct it.
I was still heart broken that my baby was going through this, and I would break down in tears every five minutes.
Just two days had passed, but Cameron’s vomiting wasn’t giving in, and he was finally admitted for gastroenteritis. Whilst being treated for this, we pressed on with our fears about his vision and were seen straight away by an eye consultant.
We stepped outside of the room whilst a nurse put a clamp on my baby’s eyes for the consultant to be able to have a look.
I remember being stood amongst a busy waiting room with people going about their day-to-day lives, whilst my world came to a stand still.
Straight away he was booked in for an MRI scan, where my tiny boy had to go through his first of many GAs.
“It appears to be Norrie disease,” the consultant said. “There is too much scar tissue, and his retinas are completely detached. Not even light perception.”
I remember walking down those hospital stairs ready to collapse, telling my mum over the phone that my son was blind. Who would of guessed a month later she would walk out of my life for good.
I spent every waking minute researching his condition, trying to find out what the future held.
Mental retardation, the internet said. Progressive hearing loss, developmental delays, autism, seizures. The list went on.
Why did this happen to me? What did my son ever do to deserve this disease? My heart was broken, and I didn’t know how to repair it.
I held my precious baby in my arms. I’ve loved him with an unexplainable kind of love and watched him grow and defy the odds.
He reshaped my heart and stitched it back together again piece by piece. I don’t know why this happened to me, but I’ve realized it could happen to anyone. It’s just a part of life. It’s not a curse or a burden. It really was a blessing in disguise.
To watch someone smile from pure emotion is the best feeling in the world. He doesn’t know what a smile looks like. It’s not something he learned to copy. It’s a feeling from deep down inside, spreading across your face, becoming infectious!
I wouldn’t wish some of the hardships he has had to face over the years on any-body. But I have learnt he doesn’t need vision to be successful or happy. And I wish I knew back then what I know now.
That he is going to be OK. Our life isn’t over. It’s only just begun. And what a beautiful journey it’s taken us on.