On the 3rd May 2013 we had a beautiful healthy baby boy or so we thought. At first glance you would think that Michael Harry is just like any other normal child but sadly he suffers from a very rare genetic disorder called Phelan McDermid Syndrome (PMS). It affects 1 in 5 million worldwide. To over simplify this he is missing parts of his DNA. PMS is associated with Global developmental delay, severe learning difficulties, poor fine motor skills, hypotonia and a range of other issues within the autistic spectrum. Michael is non verbal and there is currently no way to communicate with him in anyway he is basically a baby in a toddlers body.
One of the side effects of PMS is that the person continually tries to chew everything around them, from clothing and furniture to electric cables it all goes straight in the mouth just like a baby. This is particulary
hazardous as Michael has no sense of danger and with no way to explain it to him he is at constant risk.
If you are a parent you will know what a constant worry children are, now try to imagine if your child hurt themselves and had no way to tell you. For example if Michael fell and fractured a bone in his arm we wouldn't know, of course he'd be crying but he cries all the time anyway.
We recently managed to move to a bungalow to remove the risk of stairs as he was getting too big for stair gates. The purpose of this page is to try and raise enough money to help us adapt the property to give us an open plan living area so that Michael can be watched at all times whilst still being able to lead a more normal life. Caring for Michael is a 24/7 task which is tiring, challenging, and is a one way street because he gives nothing back, if we can get this project funded it will make a massive difference to the whole family in terms of quality of life. Due to the fact that Michael is mobile despite his severe mental impairment he doesn't qualify for any grants or help with this type of project. Thank you for Listening.