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The Elliott's story

As well as our purpose built hospice, Chestnut Tree Community Nurses visit children and families in their own homes across Sussex, offering respite care, information and guidance and specialist medical care and support.


Sam and Owen are two of these children, and their family have let us share their story with you to show some of the things Chestnut Tree House does for them.

The Elliott’s Story

A bath at bedtime. A swim on a Saturday afternoon. Maybe just a few hours uninterrupted sleep. All these things become even more precious when you have a child with a life-shortening condition.

The care that Chestnut Tree House offers children and their families in their own homes and in the hospice means that families get to enjoy more of these little things. That could mean spending an easy and relaxing afternoon together as a family. Or it could mean parents and carers being able to enjoy a well-earned break from the round-the clock responsibilities of caring for a sick child.

The hospice provides support for the whole family including information and advice, play therapy and counselling, specialist short breaks and emergency care.

And, when the time comes, they are there to support the entire family at the end of the child’s life, giving them the opportunity to say goodbye in their own time and their own way.

One family who have experienced Chestnut Tree House’s care first hand are Laura and Peter Elliott, whose sons Sam, 13 and Owen, 9, both have Duchenne Muscular Dystrophy.

Laura first became aware something was wrong when Sam was at primary school.  “The school nurse noticed that Sam had an awkward gait and suggested we go to the hospital to get it checked out. We were referred for blood tests and were expecting the results back within a couple of weeks. When we were called back in after just a couple of days we knew something wasn’t right.”

Laura and Peter returned to be told the devastating news – that Sam had Duchenne Muscular Dystrophy and that there was a 50:50 chance that Owen, their youngest son, had it too.

Laura says, “There was no history of the condition in either mine or Peter’s family but when we found out it was genetic, we immediately had Owen tested. When his positive diagnosis came back, our world just fell apart.”

As the Elliott’s came to terms with the enormity of their situation, they discovered that by pure coincidence a boy who attended Sam’s school also had Duchenne MD. The two families struck up a close bond and it was through this friendship the family first heard about Chestnut Tree House.

“Our friends mentioned that they used Chestnut Tree House and suggested that we visit the hospice on one of the annual open days. We were reluctant to go at first, but Peter and I finally decided to go on our own and have a look round.”

Laura remembers that it was the warmth of the staff and the normality of hospice life that helped put them at ease.  “We got talking to one of the nurses who gave us a ‘backstage tour’. We got to see all the incredible facilities such as the hydrotherapy pool and the multi-sensory room. We were also shown the family accommodation where we could all come and stay together. Our fears about hospice care were instantly dispelled.”

Now all the family head over to Chestnut Tree House as often as they can to make use of the facilities and relax as a family. The boys especially enjoy splashing about in the hydrotherapy pool, which really helps their condition, while their big sister Heather gets the opportunity to meet other young people who understand the unique challenges of having siblings with life-shortening conditions. Heather is also able to spend one-to-one time with the Chestnut Tree care team to talk about her own fears, concerns and needs.

The hospice’s Community Nurse team also go to the Elliott’s home once a month so that the boys can have fun at home while Mum and Dad can go out and spend time together or with Heather.

Laura says, “The boys have been able to enjoy wonderful experiences thanks to Chestnut Tree House but for us it’s the little things like being able to spend time reading, swimming in the pool and creating happy memories together as a family, that are the really big things. Those precious moments together mean the world to us.”

Chestnut Tree House knows that there are more children and families in the Brighton & Hove area who could be benefitting from their specialist care, but they need help to reach them. Linda Perry, Director of Children’s Services at the hospice explains, “A recent study has shown that there may be over 160 families in the local area who need our help but may be put off by the thought of coming to Chestnut Tree House or even just the word ‘hospice’.  We are here to support families who have a child with a life-shortening condition.  Little things like a few hours’ break from the responsibilities of caring for a sick child, a helping hand or a shoulder to cry on can make help make a big difference to these families.

“As well as reaching out to local families, we are asking people what little things they could do to help. You might want to get your company involved in fundraising, spend a couple of hours volunteering, donate to our shops in Brighton and Hove or play our lottery.  Whatever little thing you could do will mean a great deal to the children and families who need our care.”

Anybody who would like to pledge their support to Chestnut Tree House can find out more at chestnut-tree-house.org.uk, telephone 01903 871820 or email fundraising@chestnut-tree-house.org.uk. Any family who thinks they may be eligible to receive support from Chestnut Tree House and would like to find out more can also visit the website or call the Care Team on 01903 871800.