Eight years on, Nathan still loves going and we are very grateful for the time it gives us too!
Our son Nathan is sixteen years old and has received respite care at Brian house since he was eight. When Nathan stays at Brian House for the night, we are able to ‘switch off’, safe in the knowledge that everything Nathan needs will be provided for and he will be well looked after.
Nathan has multiple, complex conditions including cerebral palsy, epilepsy and he is partially sighted. He has limited mobility and balance and developmental problems, this means he needs help and care with everything he does. We are totally devoted to him.
Nathan was just six months old when we were told he has Cerebral Palsy and may never walk or talk. Having Cerebral Palsy means that he can’t communicate like you and I though he can certainly let us know what he wants and when he isn’t happy!!!!
Shortly after, Nathan was diagnosed with Epilepsy. Initially the seizures Nathan had were managed by a combination of medicines however as he grew older they grew progressively worse and were very difficult to control, so severe that his neurological doctors suggested he had an operation which involved disconnecting the two sides of his brain. This was one of the hardest decisions his dad and I have had to make but fortunately now we know it was the right one.
Nathan has been in and out of hospital all his life, enduring countless number of tests, procedures and operations. Brian House has supported us through all the ups and downs, without their help it would have been a much tougher journey for us.
Despite all Nathan has been through, he is a happy boy with a big smile that light up any room, his laugh is contagious, he is loved by all and adored by us – he is nothing short of amazing.
When we were first told about Brian House Children’s Hospice, we didn’t have a clue what to expect, but we were open minded and thought “for Nathan’s sake let’s just go and have a look”. Looking back I think we’d imagined somewhere which resembled a hospital ward but we couldn’t have been more wrong. Brian House is very homely, full of warmth and smiling faces – it really is an amazing place.
The first time Nathan stayed overnight, we all stayed as a family. My husband, daughter and I stayed in the family rooms upstairs so we could be close by if needed. We soon came to realise that respite benefits all the family, for my husband and I as Nathan’s carers and also for his sister Rebecca – inevitably meeting Nathan’s needs generally means he gets the lion’s share of time and attention.
At Brian House Nathan has the staffs’ undivided attention and gets to play and use all the fantastic facilities, eight years on he still loves going and we are very grateful for the time it gives us too!