I often think that my daughter is one in a million, due to her wicked sense of humour and intelligence that surpasses mine by a mile. There is not a day that goes by that I don't feel proud of her in some shape or form. Don't get me wrong, there are times when she pushes my buttons but that's children for you! Every parent hopefully thinks their child is one in a million, but in Iola's particular case, she is 1 in 20'000 as she has Cataracts, well 'Bilateral Familial Congenital Cataracts' to be precise and she has had this since birth.
She has my husband to thank for this as due to a genetic anomaly in my husbands family, many of them are born with Cataracts. My husband was born with it, and 2 of his brothers. His mother was also born with it. When I was blessed with 2 children I always knew that there may be a chance that either or both of them would be born with the condition so flagged it up with the health visitor as soon as my daughter was born. Thanks to this, it was picked up early and she is monitored regularly by the hospital. Bryn has been lucky so far, but our wonderful child minder did mention to me a few weeks ago that he seemed to have trouble seeing things so we will have to watch this space.....
Iola's condition is rare, and so much so that the consultant in our local hospital referred her to a larger hospital in Swansea as they have more experience in dealing with the condition in children. We spent a good few hours there today having lots of tests to see if needs surgery. To be honest, apart from the fact that she wears glasses, I haven't noticed any real signs that she is struggling to see. Her teacher did mention that she seemed to be struggling on occasion to see the board but I wasn't sure if this was Iola excusing the fact that she had got something wrong by saying she couldn't see the board.
During the tests today I was shocked to find out that the Cataracts are so bad in one eye that she can barely see out of it. She has Cataracts in both eyes so it must be affecting her more than I realised. The consultant said that is likely that she will need surgery quite soon as her education will suffer otherwise. I now need to make an appointment to see her teacher to make sure the school are aware of how her condition has deteriorated, and also she needs to have a Special Educational Needs assessment to make sure her needs are catered for.
Although the extent of her Cataracts did come as a shock, it does make me thankful that we have the technology and NHS to fix this genetic abnormality. Years ago, she would have been left to go slowly blind which can be a heartbreaking thing to happen. There will be a risk with the laser surgery and she will need four weeks off school to recover, but eye sight is so precious, it's a small price to pay.
I would love to hear your thoughts if you have ever had any experience of this condition?