Bruce is four and has cerebral palsy and severe epilepsy. He is at constant risk of life-threatening seizures which need emergency medical attention. Bruce lives with his mum Claire and dad Scott in Salisbury. Here Claire talks about their life:
Bruce has been receiving community care for since the Julia’s House service began back more than three years ago Bruce has cerebral palsy caused by a lack of oxygen at birth - it was an agonizing 17 minutes before he took his first breath. We still find it hard to think that I went into labour carrying a healthy baby but didn’t come home with one.
The first few months after Bruce was born were exhausting. He was sad all the time and the constant screaming totally shredded our nerves. He didn’t like being upright and even a trip in the car or out in the pushchair he would cry, moan or even scream.
The brain damage that Bruce suffered when he was born means he will never be independently mobile – not just that he won’t walk, he won’t be able to operate an electric wheelchair, either. Bruce can’t support his own head or sit up on his own.
Last January Bruce had a massive seizure and had to be rushed to hospital. Since then he has had more and more of these episodes.
I have lost count of how many times we have had to call an ambulance – the emergency services certainly know the way to our house now.
If a seizure goes on for more than five minutes we have to give Bruce emergency medication and if that doesn’t work we need to call 999. It is really important to act quickly because the longer a seizure goes on, the harder it is to get it under control.
This is when we really value the fact that Bruce has his own dedicated care team at Julia’s House, for not only does he feel more relaxed and happier with familiar faces, we feel more relaxed too because they know Bruce really well and know when something isn’t quite right with him. They can spot those early signs and act quickly. That is incredibly reassuring for us.
We can’t just leave Bruce in anybody’s care. We need the confidence of knowing the person caring for Bruce is someone we know and trust and will be able to handle a potentially scary situation.
Having the support of Julia’s House is so important to my mental state. You can get so burnt out with caring that you don’t even feel like playing with your child which is an awful place to be.
When Bruce was a baby I didn’t know anyone – I never got to meet other mums. Julia’s House has opened up friendships and given me the chance to meet people in the same situation.
Bruce loves his carers – they do all sorts of fun activities like messy play with shaving foam or reading sensory stories.
He is always super, super happy after a visit from Playmaker Sue. It’s rare for Bruce to laugh, but he laughed twice last time she visited, he was so excited.
Having Julia’s House there for us in so many ways – especially now, with the new Wiltshire hospice – has really made a massive difference to our lives, to how we cope.
Your Christmas gift of £25 today gives children like Bruce care both in their own home and at our hospices.