We are currently preparing for another round of surgery for Willow, which she will have a week today. Placing your child in the hands of a surgeon never gets any easier, no matter how many times you do it. Willow is fed via a gastrostomy tube in her belly. A few months ago she pulled this out and sadly the hole hasn't heeled. She has been relying on an NG tube in her nose for the last few month but this is now becoming an issue for her as she keeps pulling it out due to it irritating her. Think we're all gonna need a holiday once it's done!

If Willow could talk, we know she would say thank you for all the support so far! This week has been pretty full on researching and sadly we're coming to the conclusion that a touring caravan will be just far too small to adapt and create enough space for all Willow's equipment and a special needs bed area. So we are now looking at a static which will be much more suited for her! The running costs are unreal!! But y'know what? This little lady is certainly worth it and I'm refusing to go on a family holiday without her!

This is the type of bed Willow has to use at home. So far we have found nowhere that provides this kind of bed for short stays or even longer. Due to Willow's size now and complex needs, this means that she cannot go anywhere! She can't visit family, go on holiday or have a sleep over that children her age do. Giving her a holiday home that will be specially built to her needs, which would include a bed, storage for her gastro feeding equipment, changing facilities, wheelchair access and much more to meet her complex needs.