Let's get Joshua to Utah

Hi there, my name is Kevin and I am the partner (or significant other) of Sarah Ruane who's son is cruelly afflicted with Congenital Myotonic Muscular Dystrophy which is a progressive degenerative condition affecting all of his muscles, his heart, his vision, his hearing and his cognitive development. He was once referred to as 'the boy with no smile' as the condition unables his face muscles to express smiling. Fortunately Sarah can tell when he is smiling because it shows in his eyes. There is no known cure despite extensive research. Joshua has recently been taking part in clinical trials with Professor Nick Johnson at the University of Salt Lake City in Utah for the past three years with a view to taking part in a drugs trial that can be a benefit to all future sufferers of the condition. Sarah had been saving for this year's trip in October but a few weeks ago the chance to purchase a 'chest vest', a piece of medical equipment which enables Joshua to breathe a little better became available at such a bargain price it would have been madness to miss out on the opportunity. This equipment will hopefully keep any debilitating chest infections at bay. Unfortunately this has now wiped out the 'Utah fund' and we are doing whatever we can to get Joshua and Sarah back to Salt Lake City.

Now Sarah is extremely reluctant to ask for help and tries her very best to get him back there every year but the coffers are sadly depleted at present and we can find no other way but to ask for the help of kind and thoughtful people out there. Sarah works as a paediatric nurse and her story of how she 'took Joshua home from work' is well documented in the media and I will add links to these as they tell a better story than I ever could. Or simply Google Sarah Ruane and Joshua and follow the links to Take a Break, The Daily Mail and The One Show.

A charity exists in the form of the CMMD fight fund of which Sarah is a founder member however all the monies from this source are used to assist research for children in the UK. Several events are held over the course of the year to boost the charitys funds. Including the Summer Ball...where everyone gets the opportunity to don their gladrags and attract the usual comments such as "ee lad you don't half scrub up well"...however I digress...back to the task in hand.

A bit about Joshua.

Joshua is a happy little soul despite the odds being stacked against him. Although he finds it difficult and painful to walk he still manages to have fun in the garden with the rest of the family members. Unfortunately he cannot speak but please believe me when I say he can soon make his prescence known! He's very popular with the ladies too and he has the nurses falling over themselves to help him on his visits to various specialists. Joshua is always a hit on the school bus and a popular pupil at Kingswood School. As a relative newcomer to special needs children I find it difficult to comprehend that this little chap..who's never done any harm to anyone, will never get the chance to do some of the everyday tasks that I did as a young man....drive a car (or in my case a motorcycle)....buy a beer....get married....all the events we take for granted, Joshua is unlikely to experience these.

I will try update this site as often as possible and add photos of the little man himself. As his life progresses I shall keep you informed. I really do hope we can get them back to the University because both Joshua and Sarah deserve it. If anyone needs to know more about this cruel condition or indeed if any parents of children with similar disabilities want to learn more then don't hesitate to contact Sarah.

Thank yo for listening xx

Kevin
http://www.dailymail.co.uk/health/article-2970715/Boy-t-smile-finally-gets-home-hospital-NURSE-adopts-him.html