Jonty’s Story

"Little Havens is like a big extension to your family"

Little Havens is a place where all of Jonty’s family can visit for support. Jonty visits the hospice regularly for Day Stays, while his brother Bragi and sister Kyrea attend various sibling events.  

The hospice also offers Complementary Therapy, such as Reiki, to Amanda and Kyrea which helps them to relax and spend quality time together around caring for Jonty, describing the sessions as a ‘counselling session in itself’.  

Amanda said: “Kyrea has a great relationship with one of the Complementary Therapists, she has a daughter the same age, so Kyrea really opens up to her and it creates a safe space for her to talk about all her worries.”  

“Bragi, my 6-year-old son, loves the ball pitt and coming to Little Havens with Jonty to play and be silly together. He really enjoys the gardens and finding the dinosaurs – it all feels so special to them.”  

Although Jonty doesn’t need a lot of medical interventions, Little Havens is a place where Jonty can socialise with other young people with the same condition and do activities that are adapted to his needs.  

Amanda said: “Although Jonty doesn’t have a lot of medical needs at the moment, the nurses know exactly what he does need. He gets to mix with other children, including older children with the same condition as him. Here he can see what it’s like to be an older boy living with Duchenne Muscular Dystrophy as well as mix with other children his own age.”  

Amanda has the comfort of knowing that Little Havens will be there for Jonty and her family as a place to turn for support in the future as Jonty’s condition progresses.  

“We know what to expect as Jonty’s condition progresses, however every child’s journey with this condition is of course slightly different. At Little Havens Jonty is able to build friendships with other boys who have the same condition as him and he will be able to join in the same activities like racing in their powerchairs. Building those relationships is really important for him.”  

“Little Havens is like a big extension to your family, I can ask questions and if they don’t know they will always find out or put you in touch with the right people that can help. Last year, Jonty’s one wish was to come to Little Havens for his birthday, there was already an event on the same day, so he was able to join in and celebrate there. It’s great to have so many activities and events to look forward to as a family.”  

To find out more about how you or someone you know would benefit from the care at Little Havens, click here. 

If you would like to donate to Little Havens please click here. 

Published in 2024 

Little Havens is like a big extension to your family