A mum whose 11-year-old son has the genetic condition Duchenne muscular dystrophy says her family have “not looked back” since beginning to receive care and support from East Anglia’s Children’s Hospices (EACH).
Austin Foster started coming to The Nook three years ago and enjoys short breaks at the hospice, being a particularly big fan of the new playground, arts and crafts and hydrotherapy. He also loves attending muscular dystrophy activity days.
Mum Maxine, who is married to Steven and also has a 16-year-old daughter, Ava, says it has become an invaluable source of support since the family moved to Norfolk from West Sussex.
“When we first arrived here, we were asked if we’d considered going to a children’s hospice,” she said.
“I had my reservations, because I’d seen my dad in an adult hospice and was concerned about going down that particular road with Austin.
“However, we decided to go once and have never looked back. It’s a place of warmth, friendliness and comfort, and so many wonderful things happen here.
“Children with all different conditions and complex needs are made to feel welcome, and one of the particularly great things is the muscular dystrophy days.
“He likes being around other young people and spending time here. He was a bit daunted at the start, but now it’s become a special place, both for him and us.
“Parents are welcome to get involved, and it’s an opportunity to talk about the struggles and joy we encounter in our lives.
“Myself and other mums have become friendly and regularly meet up, sometimes at The Nook. It’s a safe space, without the hustle and bustle of a regular café.”
Austin, who loves gaming and exploring the nature on his doorstep, spending lots of time in his garden, was diagnosed with the condition when he was two.
Unfortunately, his muscles are rapidly weakening – he is losing the ability to walk – and he is also on the autism spectrum.
Despite those challenges, Maxine, who lives in Great Ellingham, describes her son as a happy and popular boy who also loves the beach and spending time with their family dog, Missy.
“He has lots of friends and is very good at building relationships,” she said.
“He doesn’t let anything get him down and takes everything life throws at him in his stride.
“I live in fear of his pain getting worse, because I hate the thought of anything affecting his positive outlook.
“He never complains or feels sorry for himself. In fact, he embraces his condition and treats every day as an adventure. As an example of that, we’re currently participating in a clinical trial in Leeds.
“He inspires me to be a stronger person, and if he’s happy, I’m happy.
“Things can be very challenging for him, and he’s on lots of medication, but he’s such a great kid. Everyone needs someone like Austin in their lives.”
Maxine is Community Relationships Manager for Harrison’s Fund – a charity that supports families after receiving a Duchenne muscular dystrophy diagnosis. It helps them bridge the gap between needing mental health support and accessing NHS services.