Hayley2211 said on 2012/11/03 at 6:00 pm
Hi,
My son is 10 months old and has been blind (well, he has light perception) from around 3 months of age. He was born 3 and half months early and has stage 5 ROP. I am told by doctors he is only the 6th baby in the UK to have such severe sight problems from ROP (Retinopathy of prematurity). I really want to speak to other parents and families as this hurts every single day and I do struggle to see a day where I am going to accept this. My little boy is amazing, so clever and such a happy little boy who has fought to be here with us today.
Not really sure what I am asking for or to discuss, I just wondered if other parents feel this way. I want to stop burring my head in the sand and become involved now. Meet other people in my position and hope to find some support and strength from this. If anyone has any advice or would like to share their experience I would greatly appreciate this. (I am a sighted parent by the way)- Thanks
elaine burke said on 03/11/2012 at 6:00 pm
Hi,My daughter is partially sighted, and will be 8 next week.We've all been where you are now,try and get to RNIB family days/weekends they're great to meet other families and be reassured that these feelings you have are normal.Kerry goes to judo,wall climbing and next week skiing!
Take Care
Elaine
Kate Clark said on 01/11/2012 at 4:54 pm
Hello,
Our two year old daughter is blind from birth by a condition called LCA - we have a website www.ellieseyes.co.uk You can read about everything we have gone through and see my amazing, happy little toddler. You can also contact us through the site.
We have also recently set-up another site for families with the same condition as my daughter www.lca-gucy2d.com there are a number of families on here that would be happy to talk to you about their child's blindness (mainly in the US though). Some of them have older children so have a better idea of what the future may hold for your family.
Finally, we have recently set-up a facebook page called 'Ellie's eyes' that you can join and this can help you contact with my VI parent friend through facebook :)
Hope to hear from you soon
Kate x
Paul Nicol - iCAN experiences said on 27/09/2012 at 6:19 pm
Hi,
Not sure how much they will be able to help, but may be worth talking to VICTA. Their website is http://www.victa.org.uk.
All the best to you and your son.
Paul