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Isla playing air hockey
Isla is able to explore her feelings and worries about her twin brother, Thomas.
Isla has a special bond with Sibling worker, Suzanne, at Little Harbour.

For eight-year-old Isla, growing up and learning more about her twin brother Thomas’ life limiting condition – and understanding more about what that might mean in the future – presents a range of complex emotions.

So being able to explore her feelings and worries with Suzanne, who works in the sibling team at Little Harbour, has been a huge help.

When the family visits the hospice in St Austell, Isla and Suzanne spend time together playing games, baking cakes and doing arts and crafts, fun activities that give Isla the chance to open up and talk about her brother.

Just 24 hours after the twins were born, Thomas began to fit. When he turned 6 months old, it started up again. These fits, also known as infantile spasm seizures, are symptoms of West Syndrome. This has now progressed to a life challenging, progressive epilepsy called Lennox-Gastaut Syndrome.

While Thomas’ condition presents huge challenges for the family, mum Sarah said one the hardest things to deal with was the impact on his twin sister Isla.

“It is heart-breaking because Isla has almost had to come second and deserves so much more of our time that we are just not able to give,” said Sarah.

“As she grows up, she is steadily becoming more aware, and empathetic, of her brother’s condition and she’s really trying to work through things; she’s noticed the memory tree at the hospice for all the children that have passed and has just realised why we’re here.

The support Isla has had from Suzanne in the sibs team has been huge; at the hospice, she has a grown up who’s just for her who she can talk to.

Little Harbour, with it’s beautiful coastal location with views of the sea, provides a homely haven of support where every single member of the family can have the opportunity to find the time and space to do the things they enjoy and if they wish, to a take a step away from their role as a carer for a short while.

Sarah said: “People might just think Little Harbour is here for end of life, but it is so much more. The hospice is so important, and so versatile in the ways it can support you. Without Little Harbour, lots of families would really struggle to get through.”