As most of our family and friends know, our youngest daughter, JoJo, has a rare genetic condition called Prader Willi Syndrome (PWS).

PWS is a condition which happens entirely by chance - a tiny missing piece of genetic information on chromosome 15. Despite it being tiny, this missing DNA effects almost every aspect of JoJo's function.

However, we refuse to let it beat us. We don't see any reason why JoJo won't be able to do everything and anything that her peers can - it might take her a little longer to get there, but we want to give her every chance going to fulfil her potential and beyond.

Everyone who has met JoJo knows how funny, smiley, sociable and loving she is. They also know how fast she can now bum-shuffle about the place. As lovely as this is (especially seeing as she could hardly move an inch a year ago), we'd love her to save our creaky backs & get up and walking so she can leave an even bigger trail of untidiness in her wake than she already does.

We recently self-funded a 3 week intensive physio block in The Footsteps Centre, an amazing physiotherapy centre in Oxfordshire, specially set up for children with neurological conditions. JoJo came on in leaps & bounds (or shuffles & wobbly footsteps) and we know another block would be hugely beneficial to getting her on the road to walking.

Alongside that, we will be enrolling her in a special programme of daily repetitive mental exercises, tailored to her, from a place called The Snowdrop Centre - recommended to us by a family we met whilst at Footsteps. We'd love to explain here exactly what this is, but it's too complicated & in-depth for us to even begin! The website is www.snowdrop.cc for anyone who wants to challenge their brain - it's mind bogglingly amazing.

So to end this essay - over the next 5-6 weeks we are going to be organising some fundraising events to help us fund the physio & brain physio that we know will make such a big difference to our lives.