Hi everyone, i want to talk a little bit about my grandson who has Door Syndrome. Its a very rare syndrome, in fact he is the only child with Door Syndrome in the UK and there are not many more worldwide with it.
Finley is 2 years 6 months old now
Door syndrome comes with deafness, no finger or toe nails, short digits and missing digits, and life threatening epilepsy. He also suffers with delayed development.
Finley cannot walk and struggles to sit unaided although he has a special suit which will help him to sit, hopefully. He also has a special pushchair and highchair and may need to progress onto a wheelchair as he grows.
Now all about Finley and his lovely character...he is a very happy little boy who loves his food and rarely cries...he has learnt to give kisses now and is very lovable. He loves playing with his snuggy blanket which has a ducks face on it that he loves to suck...
Thankyou for posting tinks.....Finley is adorable...i know him well and he is a very adorable little man...i know you have tried to post a piccie of Finley but struggled so i will ask DJ to help out with it later
Hello tinks, thanks for sharing! Finley is a tough little boy despite what he's going through. It's a really touch situation for sure and I'm not surprised with how rare it is. He is a very cute kid indeed so feel free to email the picture to here and I'll post it up on here
Hi tinks I am new to the forum what a heart touching post. Finley is a beautiful looking little chap and as a very special caring Gran Thank you for sharing him with us.
Yes mo, I spoke to tinks yesterday and he is now home...he sure is a little fighter..
He has spent so much time in hospitals, its such a shame and part of time is spent in a childrens hospice where he has lots of fun and he loves it there
I will be going shopping for the handsome boy's christmas prezzie soon..he need something noisy and flashy...so he can have fun with it and give mummy and daddy a headache on christmas morning lol
So happy to hear Finley is well enough to come home. Please, no noisy toy--his parents deserve kinder than that, and he cannot hear. Soooo, my vote for colorful large blocks that can be handled without full digit control, pile up and knock down, a little man's game!!!! Or, entirely different direction, a very soft, huggable dog (washable!).