Video: Charlie’s story reinforces Sussex hospice ‘Live For the Now’ message

This year, Children’s Hospice Week (May 21-27) is all about remembering that life is short and recognising the importance of making moments that matter.

To coincide with this, Chestnut Tree House is highlighting its focus to help local children with life-shortening conditions, and their families, live For the Now.

Making every moment count is done in many ways by Chestnut Tree House, both at the hospice near Arundel, and in families’ own homes across Sussex and South East Hampshire.

By providing safe spaces for carefree fun and laughter. By helping parents and carers find time for themselves. By supporting families in their final moments together.

It is about the good days as well as the not-so-good days.

On a visit to Chestnut Tree House, kids might be an astronaut in the multi-sensory room. Discover creepy crawlies on a woodland walk. Or make their own band in the music room. With the help of the Community Nursing Team, children can go out to explore the local community. Visit the local park, or play games at home.

Charlie’s story

Chestnut Tree House has been supporting 12 year-old Charlie and his family for five years, helping them make every moment count and ensuring they can spend quality time together.

Charlie has cerebral palsy and epilepsy, both as a result of being born at 32 weeks, but his parents Mary and Russ say that this doesn’t stop him doing anything and having a happy childhood.

On visits to Chestnut Tree House, Charlie loves playing the Xbox and spending time in the music room, where he can make different sounds on the drums and piano.

For his dad, Russ, one of the best things about Chestnut Tree House is that “everybody knows Charlie.

“They know his strong points and what he likes to do. It’s the one place where he feels totally relaxed, as he can go and do his own thing.”

Charlie describes Chestnut Tree House as “fun and friendly” and he has made lots of new friends. Like most children his age, there are times when Charlie craves a bit of independence, so it’s no surprise that one of the positive aspects about visiting the House is that he “can pretty much do anything there without mum or dad.”

For Charlie’s mum, Mary, Chestnut Tree House gives the family “a chance to spend time together, but also for Charlie to do the things he wants without us. It’s just a great place for us all to relax.”

In addition to visits and respite breaks at the hospice, Charlie receives care in his own home from Chestnut Tree House Community Nurses. Kimberley, Charlie’s Care Support Worker, helps support the family by looking after Charlie at home, taking him out for the day, or playing games.

Russ and Mary describe Chestnut Tree House as “a really special place” and “probably the only place that we know we can leave Charlie to be safe, where he’s happy. Without it, I think the intensity of everyday life would just be ongoing, so it gives all three of us the chance for a little break.”

Chestnut Tree House wants to continue helping families like Charlie’s live For the Now.

Making every Now count doesn’t stop at families. Chestnut Tree House supporters get involved and challenge themselves. They take part in events. Cheer friends to the finish line. Donate. Supporters make every moment count and help Chestnut Tree House to help families create their moments and live For the Now.

Chestnut Tree House opened its doors on November 11 2003 and currently provides care and support to around 300 children with life-shortening conditions and their families across Sussex and South East Hampshire – both at the hospice and in families’ own homes.

The cost of providing this vital service is over £3.5 million per year, yet the hospice receives less than 7% central government funding.

All care is provided to families free of charge, so Chestnut Tree house relies heavily on the generosity and support of the community.

If you want to know more about Chestnut Tree House go to the website.