Precious family story time – Alfie’s story
11th October 2018
Alfie’s mum shares her story of how Living Paintings’ Touch to See books have changed her little boy’s life.
“Alfie is was born on 22nd December 2014; Harrison became an older brother and our family was complete.
After a few days, we notice that Alfie’s eyes just didn’t quite look right. We were referred to our local hospital for tests and told we had to see a specialist at Great Ormond Street hospital because they thought he had bilateral cataracts. Four weeks later we were seen at GOSH. After a whole day spent there and several tests later, we were told the crushing news that Alfie had an incredibly rare condition called Norrie Disease and was totally blind. We were devastated. We found out that Norrie disease is an ultra-rare, X-linked genetic condition, causing boys to be born blind or with severe visual impairment. Secondary symptoms include hearing loss, developmental delays, autism and for some compromised mobility.
There was nothing that could be done to save his sight and there were so many other issues that might affect him. It was a completely different journey we were on now as a family and we had to learn so much more to cope and do the best we could for Alfie and his development.
We would read to Harrison every night when he was a baby so wanted to do the same with Alfie even though he wouldn’t be seeing the pictures. Sometimes he would get bored and just not be interested. When Alfie was eighteen months old I registered with Living Paintings after seeing children enjoying the books on Facebook.
A few weeks later, our first brown box arrived and the books were wonderful. Alfie was given a Spot the dog teddy and he would hold this while we read him The Spot books that came in the box. He gradually became more confident with feeling the pictures and the Braille. Alfie’s older brother, Harrison loves the books as much as Alfie. We love that Harrison reads them to Alfie everyday and encourages him to feel the pictures and the Braille. Alfie now prefers reading with Harrison than mummy and daddy! I love that the boys are able to share this activity together as there is a lot that sometimes Alfie isn’t able to do with Harrison and this can be frustrating for both of them.
Alfie is now almost four and still doesn’t have many words but when he is exploring the books he will “ooh” and “ah” at feeling the different pictures. His favourite is the Gruffalo. He just wants to feel the spikes on the Gruffalo’s back and has even started to repeat some of the words as we have read it and listened to the audio so many times! Having access to this incredible service has strengthen their bond and given Alfie access to books that he would never have been able to experience. They are also a huge help with his development. He absolutely loves the audio books too and will often wake up at 1am asking to listen to Stick Man to help him fall back to sleep!”
Alfie’s mum and two other Norrie mums set up The Norrie Disease Foundation, a charity to support families and those with Norrie Disease, and engage in new research about the condition. For more information about Norrie disease, please visit www.norriedisease.org.uk.
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