A mother-of-four who developed back pain while caring for her Down’s syndrome son, has seen great improvements thanks to a pioneering fitness programme. Barry Nelson reports

TEN years ago, Julie Jones and her husband, Stephen, decided to try for a third child. They ended up having twins, including one who was born with Down’s syndrome.

“My husband always said we had a family history of twins, so when we went for the check-up and discovered I was pregnant with twins we both laughed. They were born five weeks premature,” says Julie, 47.

Hallie was born first, trauma free, Evan was born 16 minutes later and had to be resuscitated.

“I was terrified and so relieved he survived. We knew straight away that something was different with Evan.”

He has Trismony 21 – the most common form of Down’s, which affects every gene in the body and manifests itself in characteristics such as lower IQ, heart defects, impaired eye sight and shorter life expectancy.

“There is nothing that can prepare you for the news that your child will have special needs for the rest of his life. It was a real shock, but we all tried to be strong for each other,” Julie says.

Julie and Stephen had then been married for 16 years and already had two sons, Ashton and Kane, now 21 and 18. Adjustments were made to family life to cope with the new additions. Julie gave up her career as a hairdresser to become full-time carer to Evan. Her mother, until her death two years ago, provided huge support to the family.

“My mum was a tower of strength, and I was able to rely on her for support. But she was diagnosed with lung cancer caused after working for several years in an environment that she was unaware contained asbestos,” says Julie. “It was devastating.”

Stephen, a self-employed warehouse distribution manager based in Washington, has taken more of a back seat at work so he can provide support for the family at home.

Julie says of Evan: “He is an amazing little boy and we are so proud of him. But I can’t pretend it has been easy, particularly now I don’t have my mum for support. It’s incredibly demanding having a child with Down’s syndrome.”

She developed chronic neck and lower back pain as a result of caring for Evan. Then she found she was eligible for a free eight-week Cardi-Back for Carers programme.

“Physiotherapist Neil Sleeman and his team, who deliver Cardi-Back, are very knowledgeable and passionate about their work and because it’s personalised exercises with a Swiss ball, you can learn and do them at home,” says Julie.

“Not only has it been good in terms of resolving my back problem but, more unexpectedly, I’ve enjoyed being able to spend time with people who are dealing with similar issues. Often, when you look after a loved one it is easy to forget about yourself and have breaks.

“One of the other carers in the group said to me when I was talking about Evan: ‘We are not here for your son, we are here for you. You can’t care for him 100 per cent if you don’t look after yourself’.”

The Northern Echo:
Julie with son Evan

Julie says: “Not only has my back improved dramatically in only a few weeks, but I’ve met a lot of like-minded people in similar circumstances. I know of four other carers who did the same course I did and who, like me, have signed up for another six-week course – including an 80-year-old who has been caring for his wife, so age is no barrier.”

Meanwhile, Evan is due to start secondary school next year, where the aim is to support him to be more independent. Julie says: “We are delighted with his progress. We are aiming to help him get him as independent as possible. Both our older boys are wonderful with Evan and I’m proud of how they look out for him and his sister.”