Louis is the inspiration for developing the charity, Charlie House.
Louis and his twin sister Eva were born extremely prematurely at 24 weeks. Unfortunately Eva was very poorly and passed away the day following the twins’ birth.
Louis’ parents Craig & Tracy spent much of his first year juggling caring for Louis whilst he was in and out of hospital and looking after their eldest son Ellis.
“The first couple of years were particularly difficult, we spent a lot of time in hospital with Louis and when we did get him home we were just overwhelmed with the realisation of what we actually had to do for this small and precious bundle with very complicated needs – he came home with a variety of medications, a feeding tube, oxygen and had pulled himself through several major operations. We were told that we needed respite and support but unfortunately due to the complexity of Louis’ needs there was nothing available locally - we tried everywhere.
We also found that getting the right information was really difficult, sometimes it just depended on being lucky enough to meet a mum or dad that knew what to do and where to ask for help. No one person or place seemed to be able to give you all the help you needed.
We didn’t want anyone else to feel that there was no support available locally once they had taken their precious bundle home, so we started to look into developing a charity to support families like ours – the seed for Charlie House was planted.”
Louis has been diagnosed with severe quadriplegic Cerebral Palsy, severe Dystonia, Chronic Lung disease and Spina Bifida Occulta. Louis is wheelchair bound and relies on someone 24/7 for all his cares and personal needs. He loves taking part in group activities, enjoys playing games on his eye gaze computer and has the biggest smile – which is very evident when he is enjoying himself.
“The Activity Short Break was so good for us, we were able for the first time to experience fun activities together as a family. The additional bonus was being there with other families who were in the same situation as us – we have made some great friends who really understand what it is like to have a child with very complex needs.”