Andre’s story

Meet Andre

“Andre is a happy go lucky boy, always smiling and humming tunes.”

Just like any 11-year-old, Andre loves music, going to school and spending time with his big sister. He’s a clever, funny and determined young man, but unlike many boys his age he also has a life-shortening disorder called Duchenne Muscular Dystrophy.

Before Andre and his family moved from Goa to England they had never heard of Duchenne Muscular Dystrophy, a progressive genetic muscle-wasting condition that mostly affects boys and sadly has no known cure.

Apolina, Andre’s mum, shares their story

“When we first arrived in the UK in 2015, Andre was walking and enjoying mainstream school. He didn’t have many words, but we didn’t know why this was or if anything was wrong.

A year and a half after we moved, I noticed that he was not able to run like other children his age and we had the results back from a blood test which changed everything. I was very sad to learn about his life-changing diagnosis and how the condition would affect our healthy five-year-old boy. The hardest thing was knowing there was nothing we could do to stop it.

A home visit from Chestnut Tree House

When a nurse from Chestnut Tree House came to see us at home, I had never heard about children’s hospices – I was still trying to understand Andre’s diagnosis and I was determined to look after him myself. But when you have a very sick child, life is non-stop and I realised I couldn’t manage it all on my own, especially after he stopped walking.

The thing that has helped most is our visits from the Chestnut Tree House Community Team. Susan has been coming to our home for almost four years now and from the moment she arrives, I know I can relax. Andre also has autism which means he is not very good with new people, so it is amazing to see how well they have bonded over the years. It also took me some time to leave my child in someone else’s hands, but when I see the smile on Andre’s face when he is with Susan, I can’t believe how happy he is. It’s beautiful to see how well she cares for him.

The importance of routine

Because of his condition, routine is very important to my boy and he likes to have everything in its exact place. His dad has to get him up each morning before work, he has the same breakfast every day, and if I move anything in the house by mistake he finds it and puts it back! Andre also has a fixed routine with Susan; after she showers him, they have a cup of tea and then he loves to go for a long drive in the countryside. Susan is his favourite person because her car has an electric swivel seat which means he can sit in the front! They go out no matter what the weather, and that’s when I have time for myself. Sometimes I like to take a shower and spend a bit longer than I normally would, as I don’t have to rush. These small things make a big difference.

Fun for all the family

Susan also takes us to lots of fun places as a family during the school holidays. Andre doesn’t have many words, but he’s not stopped saying ‘fish’ since we visited an aquarium recently. He’s also been on a speedboat, watched an owl show and we’ve all enjoyed ice cream at a local park. It would be very hard to do these things without Susan, it means a lot to have her by my side so I don’t have to worry about anything.

She has also taken us for day trips and to stay at Chestnut Tree House. Andre is very comfortable there, he can tell that everyone is caring like Susan. His favourite things are the food – he always asks for more! – and the pool. His sister and dad come too and we have fun swimming as a family; there is a hoist for Andre and he loves the warm water and playing with the floats.

Afterwards, we explore the gardens and Andre goes the whole way around the woodland walk and uses the swing in his powerchair. There’s always something new going on and one time we visited there were llamas in the garden! You don’t get llamas where we are from in India so Andre was so happy to meet them.

“I don’t know what we’d do without them”

I tell myself that life is not easy for anyone and it’s important to appreciate what you have, but I do worry about the future sometimes. Andre’s condition is always changing and recently I have been finding it very difficult as the steroids he takes mean he has gained a lot of weight and he now needs a ventilator overnight to help him breathe. All we can do is try to take each day as it comes, but it is comforting to know that whatever happens Chestnut Tree House will be there to support us.