thomas's story

Eight-year-old Thomas has Labrune Syndrome, a neurological condition which means he cannot sit up or stand, has limited eyesight, is non-verbal and has seizures every hour due to his epilepsy. He does, however, love his food! He stays at Little Havens for respite with his mum, Victoria; dad, Tim and older brother, Andrew, 10, who also attends sibling support groups, Krafty Kids and The Inbetweeners.

Thomas’s Mum was referred to Little Havens by a friend whose daughter was cared for by Little Havens before she died.

Tim, Thomas’s Dad, says

“When we first stayed at Little Havens it was a massive deal for us to leave Thomas and actually have a break from being his carers, but the staff were so supportive and helped us feel comfortable to be able to do that. Now when we come for the break we are all ready for one. It really is a sanctuary for us when it all gets a bit intense and gives us relief from the constant pressure and stress that comes with being carers for Thomas."

“Little Havens gives us quality time with Andrew too. When we stay we’re able to take Andrew to the cinema or for days out to places which either aren’t accessible for Thomas or which won’t be of interest to him, while knowing Thomas is in the safest hands.”

Victoria, Thomas’s Mum, says

“When my friend first suggested we might benefit from a hospice, I couldn’t get the end-of-life association out of my head; but when I walked around Little Havens, it just felt right. It has everything that Thomas loves – the outdoor space, the swimming pool and the multi-sensory room."

“Little Havens has been a massive help to us. We have always used it twice a year for respite. In the Christmas holidays we go as a family. It means I can be his mum and not his carer for a while. We can do fun things like use the swimming pool together. It also gives us an opportunity to have individual time with Andrew, so he feels like he is having quality time with both his parents."

“Andrew has benefited immensely from the support at Little Havens. When we were initially dealing with Thomas’s prognosis we could see that it was affecting Andrew but we didn’t know how to help him. Alison, the Sibling Support Worker, came to visit him at home and spent time talking to him using Lego as a way to connect with him. This was powerful and Andrew really benefited from it."

“Andrew also attends the sibling support groups – initially Krafty Kids and then The Inbetweeners. It is his choice to go. They do fun activities so he sees it as a positive thing that he gets to do because of his brother and it has helped him to realise that he isn’t alone. Andrew adores his brother but I can see how without the right support things may have been different.”

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