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Hello everyone. We have a 4 and a half month baby girl called Abi who was diagnosed with achon at a week old, thanks to the vigilance of her midwife. Abi is...
All achon babies are cute. They are a joy to be with and in the long run she will be famous one day. Each of them have different problems!! Like my 17+ son has...
Hi Kim, I totaolly agree! all achon babies are gorgeous, and I don't know if it's a common trait but Abi is so happy and content and full of character. I think...
Hi everyone, we had Abi's decision letter today for her disability living allowance claim, and she has been refused! I was wondering if this has happened to...
Hi there He is currently under physio which is free but going through acupuncture which is not free. We hope he will not be in great pain unless he opt to go...
Hi there we live on the isle of man, Dylan was refused dal when we replied a few months ago. Dylan is 17 months and has achon. We have not appealed yet,...
hi leanne. yes this is the usual thing. you will find she will have to be three before they will consider her. there are lots of schems around to give you...
Hi Leanne, I have a little girl Elowyn, who was three in January. I applied at about six months for Dla and we were rejected, we reapplied at the age of one...
Sorry me again. Also remember that each case is individual, as elowyn has a slight curvature of the back which now she is walking is correcting itself and she...
hi we tried to get dla for gracie when she was 6months as well but they said no to us and we tried again and again  now she 3 we put in again for it and still...
hi leanne we got the care part of dla for jamie when he was three months the mobility part they do not get till they are three yes it is worth fighting for...
Hi Tracey, Probably worth chasing up your application, then if they are waiting for anything at least you will know and may be able to chase from your end. I...
Hi, me again :-) there was another thing I was wondering if anyone had any advice on. We have just stated weaning Abi and at the minute she is being fed in her...
Hi all, thankyou for your replies. I think I'll wait another few months and re-apply. The form is so hard to fill in, and it's horrible writing all the...
Hi Julie, I wouldn't feel guilty atall. Just after I had my baby girl the midwife thought something wasn,t quite right and refered her to a consultant, and she...
I think you should pat yourself on the back, you have obviously treated him the same as you would any child and he is fine. It shows a lot of the stuff on the...
Hi everyone, Our geneticist at Great Ormond Street provided us with a booklet of information and growth charts for our baby son called 'Children with...
Hi Rachael it is recommended in the supervision guidelines that an mri should be carried to check the foreamen magnum. from what i read it seems all...
Hi Sharon, Really appreciate you sharing your experiences. I will let you know how we get on. Interesting to see how they approach it in the US. They seem...
Hi Rachael Fern is 6. she originally had a diagnosis of achon but after genetic tests this changed to hypochondroplasia when she was 4. they are very similar...
Hi all, Dylan is 17 months with achon and hasn't had an MRI, in fact he has had nothing done medically. Sometimes I feel I should do more to push for things...
Hello Rachel, My daughter Terra is almost 5 now. I think your question about how pro-active you have to be as a parent is a very good one. It is difficult to...
My boys start school in September, can any of you give me any ideas on PE. I'm not sure if there are things I should warn them about, or thing i should advise...
Hi everyone, I was just wondering if someone could offer me some advice. Abi is nearly 7 months now, and because she's still not sitting yet, her head has gone...
hi leanne, we have a g/daghter aged 3 her head stayed flatish at the back, with a bold forehead, they tend to carry a lot of fluid and so you need to be ...
Hi Leanne, my son Archie had quite a flatish head at the back but he's now 2 and half and its fine, he seems to have as the neurosurgeon put it....grown into...
Hi Tracey trying to send you a message on here and im having no use,all our families are in Manchester and you are welcome to come to our meet up on sunday at...
Hi everyone, thanyou for all your replies, they are much appreciated xx and thanks Kristy, I found that website very usefull and I am going to get the pillow...
