Amelie is doing well with the jej tube though we are a bit fed up of it!! She has put some weight on so at least it’s paying off! She’s sat here at her big sister’s birthday celebrations – we were trying to temp her with some cake!! She saw the Spinal Surgeon last week…

AMELIE’S NEW TUBE!!! AND THE BAG! Amelie has yet again been a very brave girlie! She had her new ‘temporary’ jejunostomy tube fitted on 31st May (or ‘JOSTOMY’ as Amelie calls it)!!!  Amelie’s stomache doesn’t tolerate large volumes of milk and so after a few hours just stops and she had been retching a lot…

On a sunny April Sunday we had the pleasure of meeting a wonderful family who’s daughter, Maci has Russell Silver Syndrome – like Amelie! Maci doesn’t live too far away from us and we had a great time meeting up! The girls were a bit shy to begin with then had a great time playing…

Apologies for not posting for a while! Life has been very hectic! As you can see, we now have a sink that Amelie can ‘reach’! I think she has become a little obsessed with her handwashing at the moment!! Am sure the novelty will wear off! One small step towards making our house accessible for…

Amelie’s chair arrived on Saturday – well, a loan chair for now as the company has been let down with parts needed to build hers (and others). Her’s will be in pink but she’s not complaining about the blue for now!!! She’s been very keen to get in and out of it in the house…

Following Amelie’s appearance in The Mirror over christmas we have been approached by several TV companies wanting to make a documentary about Amelie and Russell Silver Syndrome! We  didn’t really think this would happen, so agreed to a company making further enquiries! Anyway – to cut a long story short, the company who we went…

Hello all! We had SUCH a lovely time yesterday on the set of This Morning! Everybody was SO lovely to us, we were made to feel so welcome. The crew back stage couldn’t do enough for us and Holly and Phillip were extremely genuine and very welcoming which made us feel at ease! We had…

We have been invited on to ITV’s This Morning to raise awareness of Amelie’s RSS and the difficulties life throws her way! We are very excited about the trip – we leave for London on Tuesday 8th Feb 2011 and hope to enjoy a fun-filled afternoon at the British Natural History Museum! I am taking…

Welcome to our site! We thought this was a great way for you to find out more about Amelie’s condition (RSS), how she’s progressing, what treatment she is receiving and any events that are planned. Amelie Jayne, although very small, has a very big life and although she is blissfully unaware of what lies ahead…