Matthew was born a perfectly healthy baby, but the day he turned 6 months old, he was rushed to hospital following a seizure. He spent the next 3 months there, both on intensive care and the baby ward, whilst baffled doctors ran endless amounts of tests. Eventually they declared he was suffering from 'encephalitis, most likely cause the herpes simplex virus', or in laymans terms, probably caused by being kissed by someone with a cold sore. An MRI scan showed permanant brain damage in all areas of development. When we left hospital, our happy bouncing baby boy that had been on the verge of sitting unaided, could no longer control his limbs, hold his head up, track objects with his eyes, or even swallow his own saliva, let alone eat or drink. As well as bringing our little guy home, we were also joined by a nasogastric feeding tube, a feeding pump machine, and a suction machine.
Matthew has an older sister who was just 4 when he was admitted to hospital. She spent the whole three months being taken care of by her daddy and grandma, and although very upset by barely seeing her mummy and baby brother, coped admiringly well. This continues to this day. He also has a younger sister who was born when he was only a couple of years old. Both sisters dote on their brother.
Matthew is now 10 years old, and the improvements he has made has surprised and amazed medical professionals over the years. We have saved up, and fundraised for many sessions of intensive therapy and down to this and his own hard work, he now has full head control and can sit unaided. He is still unable to walk and talk but can eat and drink normally, and can even weightbear.
We love to spend time together as a family but are finding overnight stays with friends and holidays becoming impossible as due to his size, he is no longer safe in a normal bed whilst using a baby bed guard. At home he has a superb profiling bed as supplied by the NHS which keeps him safe and enclosed, but any other bed he is liable to fall out of, and as he has no saving graces he can injure himself quite badly. As he is unable to call out we don't always find him straight away, which can means he is cold and uncomfortable.
After much searching, we believe we have found a solution in something called 'the safety sleeper'. This is a fold away travel solution that can be used both on a normal bed and with an air mattress. We have had a quote from the UK rep for this, which comes to a total of £1908.28.
I am planning a series of fundraisers for this item, which will last him into adulthood. If anyone is kind enough to help, or share this page, we will be so so grateful.
Thank you for reading this far, and have a great year!