Without Brian House there is no way we could function as a family.
My 11 year old son Jack is a very happy, energetic boy but his condition means that caring for him is intense; he cannot be left alone for a second. The only time we get a break is when he stays at Brian House for the night.
Jack has Dravet Syndrome, a rare and severely disabling type of epilepsy; he has seizures which can cause sudden death. In addition, he is severely autistic, has no speech and is double incontinent so all his needs have to be met by us.
When Jack was three, a health care professional referred us to Brian House Initially, my husband and I were very reluctant – our child wasn’t dying, why did we need the support of a hospice? It took us a long time to accept that we did need support, but I am so glad we did.
Jack loves staying overnight at Brian House – once a month usually from 2pm on Saturday to 2pm on Sunday. Because of his autism he doesn’t interact with the other children but he really enjoys the sensory room, the ball pool, the interactive carpets and playing in the kitchen. We are reassured that Jack is well cared for and happy, and that enables us to relax and have a much needed break – when Jack is happy, everyone is happy!
I have another son, Oliver who is 15 years old. When Jack is at Brian House, we spend valuable time with Oliver, we are able to be spontaneous and do things that we just couldn’t dream about doing with Jack – even going out for tea is a treat.
Jack’s condition is never going to improve; coping with it is our long-term normality. Without Brian House, the amazing staff and its fantastic facilities there is no way we could function as a family. Brian House is our life-line.