“Mum I can’t see the whiteboard at school properly”
Me: “Are you sitting close enough to the board?”
“I always sit near the board and the teacher, always have to otherwise I cannot lipread and miss out in class”.
Me: “I think you need an eye test, maybe you need reading glasses”
“I’m also getting terrible headaches”.
An eye test was arranged for both daughters that coming weekend.
Yes, both daughters as the younger daughter always felt she was missing out on the never ending appointments Molly already had because of her deafness – she now realises just how fortunate she is I should add.
Arriving at the local opticians at 9.30am that December morning both girls quite excited we waited for their names to be called out.
Lily went first, she was very excited and was thrilled to be told she needed mild reading glasses.
Molly was next, her test seemed to go on and on and on and twice I was asked if other staff members could look at her eyes as she was displaying something out of the ordinary.
I began to feel very anxious, coincidently I’d had my own eyes tested for the first time just a week or two before so I was suspecting something wasn’t right.
However, Lily was skipping around with excitement that she needed glasses!
By the time the optician had finished his investigations and spoken with several staff members my husband had got to town from football with the boys.
The girls were asked to choose their frames with another member of staff as Molly too needed mild reading glasses whilst Andy and I were asked into the consulting room with the optician.
The door closed behind us and then came the hammer blow which was to change our lives forever.
“Do you mind if I ask about Molly’s hearing as we noticed she wears hearing aids?”
Molly was born severely deaf, picked up at 18 months after lots of fighting to get her tested properly as her speech was not developing – we had been told Molly’s deafness was a “technical blip” it is nerve damage and therefore she would need hearing aids all her life, we had dealt with that.
The optician explained that he had recognised RP (Retinitus Pigmentosa) when looking into Molly’s eyes, a progressive retinal condition, that it looks slightly different in a patient with Usher Syndrome.
Usher Syndrome is deafness and RP and there are several types. “Your daughter is the only patient I have ever seen with, what I suspect to be Usher Syndrome, which is why I asked if my colleagues could see, it is very rare and some opticians might never ever see it”.
Then those words I’ll never forget “Don’t be alarmed but your daughter must see an eye specialist as soon as possible”.
On leaving the consultation room I was in shock, I could see my two beautiful daughters trying on glasses, excited and happy, just how they’d always been and all I wanted to do was cry – it’s true it hadn’t been confirmed but as much as I didn’t want to believe it, I just knew not only did I have much to learn to support my daughter but that life would never be the same – I was in shock.
That news came on 11 December 2006, two weeks before Christmas.
Google came into its own, I read and researched, read and researched and read and researched from that day until 2 January 2007 when we had our first visit to Moorfield Eye Hospital in London and saw the amazing Professor Tony Moore who confirmed Usher Syndrome and most likely to be type 2, this was later confirmed through genetic testing much later on.
I made it very clear at Moorfield that I did not want Molly told of her diagnosis. I felt at only 12 years old breaking this bombshell to her should come from her parents.
How I told Molly is another story……
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