Sam’s 6 year old brother Josh has a rare, severe case of epilepsy, so Sam has taken on a lot of responsibilities of being a young carer, at just 10 years old himself.
When Josh’s illness started at just 5 weeks old, Sam was having to spend lots of time at family and friend’s houses, while his little brother was in and out of hospital. He’d wake up in the morning and parents Tim and Ruth wouldn’t be there, as they had to be with Josh.
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Seeing his little brother being rushed to hospital, and witnessing his epileptic seizures has become the norm for Sam. But Little Harbour has provided a safe space for him to be a normal 10 year old boy.
The family began visiting Little Harbour in St Austell in April 2023, and from the very moment they walked through the doors, they settled right in.
The hospice quickly became a home from home for the whole family, but someone who has really benefitted from the services available at Little Harbour, is Sam. The Sibling Support Team at Little Harbour play a vital role in helping Ruth and Tim communicate with Sam. All of Josh’s hospital trips and investigations had a massive impact on Sam, as he’s witnessed his little brother having seizures and the constant comings and goings of paramedics.
Tim said: “Sam has always been aware that there is something going on with Josh, as he’s seen the ambulances and has spent a lot of time in hospital with us and his brother, but he has also had to spend lots of time with grandparents and family friends.”
Ruth said: “Their first day at school in September 2022, we couldn’t even go and pick up Sam, as we were going to A&E to be with Josh as he was seriously poorly. Sam has had a lot of anxieties and worries revolving around health conditions, and we’ve had to tread carefully with how we word things to him.”
Tim carried on saying: “For Sam particularly, Little Harbour is a place where he can be himself, and he doesn’t have to take responsibility for Josh or be concerned. He gets to meet other people and other siblings who may be going through something a bit similar, and he knows he’s not alone.
We’re not having to abandon Sam to be with Josh, and we don’t have to worry. Everyone at Little Harbour has been amazing, but the Sibs team particularly have been brilliant at making Sam feel at ease.
When asked what he likes most about visiting Little Harbour, Sam said “Everything, especially meeting new friends!”
Sam has made friends with other children at the hospice of all ages, he finds comfort in knowing that other children are going through similar things. He’s met siblings that live locally to the family, and has met up with them at Young Carer events in Plymouth.
Richard said: “One of the first times I met Sam was when he and his family were in for a stay with his little brother Josh. I walked past our TV lounge and noticed Sam sat on the sofa in a full Arsenal kit, I had to go and say hello!
“I told Sam how I still had my Arsenal kit from when I was about his age. I then brought my Arsenal shirt in to show him the next day. From here Sam asked if I wanted to play FIFA… or probably I asked if I could! He was of course much better than me and delights in beating me whenever he visits with Josh. What he doesn’t know yet is that I have now bought myself a second-hand console and I’m practicing at home so I can try and beat him next time!
"On a serious note though – as well as during music, it is often doing things outside of strictly Music Therapy that enables me to build a bond with some of the children and young people who visit us at Little Harbour. Hopefully Sam feels that I am someone he can then talk to about anything he was worried about.”
Communication with Sam carries on with the Sibling Support Team between visits, whether it’s about the little things or the big things. A plan is currently being put in place for further support for Sam, surrounding emotions and conversations about death.
We don’t want him to be worried about Josh, but this is enabling him to open up. Little Harbour is his place where he can be himself, he can be Sam.