This Children’s Hospice Week (19th-25th June), local families of children with life-limiting and life-threatening conditions shared how Hospice in the Weald for Children is making a difference to their lives.
Known for providing outstanding care for terminally ill adults and their loved ones in west Kent and East Sussex for more than 40 years, Hospice in the Weald extended this in January to also care for children and young people.
Now, six months later, more than 40 children, parents and siblings are receiving support from the Hospice’s specialist team, including home visits and emotional support from a family therapist.
10-year-old Ronit Gurung (cover photo) and his family receive home visits from the Hospice’s team. Ronit is unable to walk or sit up by himself and can’t communicate verbally, so expresses himself using facial expressions. The team helps to get Ronit washed and dressed, provide chest physio and administer feeds and medication.
“Ronit has the most amazing smile,” said mum Roshni. “He loves music and dancing and giggles at funny things. When you have a child with additional needs, it’s hard to get time to yourself. Thanks to the Hospice team, I can have a few hours break and don’t need to worry. I know Ronit is being looked after and loves all the activities.”
Fiona Ashmore, Lead Children’s Nurse, said: “Ronit lights up a room, he melts our hearts. We make sure he has fun with arts and crafts, songs and books. ‘Heads, shoulders knees and toes’ is a favourite! Ronit recognises us and gets excited when he sees us. It takes time to get to know each child, and we are building a lovely bond.”
The team also provides after school support for 14-year-old Joseph Williams and his family. Joseph has DiGeorge Syndrome, a rare condition which means he is unable to walk and has learning and health difficulties.
Mum Faye said: “Joseph’s a happy boy, so playful. He’s a bundle of love and joy. The Hospice staff give him 110 per cent. He loves bath time, the more bubbles the better. It’s a relief to know I can safely leave him in their care and can get on with sorting out his feeds and medicines.
“One of the team also comes on hospital visits and keeps Joseph calm and entertained on the journey. It’s a great help.”
Tracy Smith, Head of Service for Children and Young People, said: “We know there are 99,000 children in the UK living with a life-limiting condition and this number is growing.* We launched Hospice in the Weald for Children to help meet the increasing need in the area, so are proud to already be supporting more than 40 amazing children, parents and siblings and plan to extend this to reach many more families by the end of the year.”
To find out more visit Hospice in the Weald for Children
* Together for Short Lives
Photo captions: #1 Ronit enjoys an arts and crafts #2 Joseph has fun with the Hospice’s team