Campaigning mum Jules Layton is on a mission to make other parents understand why it’s so important to speak out. She talks to SARAH FOSTER.
All the paperwork inside the different coloured files relates to son Jack who has just turned five.
When he was diagnosed with Becker muscular dystrophy their world came crashing down around them.
Less than a year on it’s still hard. But Jules can laugh as she recounts the lengths she’s gone to in order to make it through the daunting wilderness that closes in once you’ve been told your child is sick.
She’s not chained herself to some organisation’s railings, yet. But nagging people on the phone and fighting back the nerves in order to speak to MPs at Westminster have been part of the journey.
There’s been the emotional grief and bewilderment to contend with. Then there’s the practicalities of trying to make sure her boy gets the same chances as everyone else. That the muscular dystrophy there’s no cure for won’t be the thing that defines him.
Jack’s a cheeky chap, good company, head-strong and funny. He’s a charmer who loves going swimming with his dad Stuart.
But when Jules realised there wasn’t a lifting hoist for the training pool at Fareham Leisure Centre and the changing facilities weren’t as good as they should be, she could see one of the things Jack enjoys most just slipping away from him.
So she picked up the phone, made some calls and pointed out that better facilities would be needed – not just for her son but for everyone else who uses the centre.
And she kept phoning, admitting she was surprised when someone listened, and delighted when Fareham Borough council told her the work would be done.
‘I’m not one of these people who can just walk away,’ she explains.
‘Some people can, I can’t do that. I don’t want to have to tell Jack that there’s something other children get that he doesn’t.’
By the end of March, £25,000 worth of work will have been carried out. A stainless steel wheelchair which can be lowered into the training pool, a moveable shower trolley and a pool lift chair and hoist will have been installed.
Fareham Borough Council has put £1,600 towards the cost of equipment and a grant from Aiming High For Disabled Children, allocated by Hampshire County Council, will cover the rest.
So that’s one plate that’s made it down safely then. But there are others still circling high above her head.
‘I think parents should pick up the phone,’ says Jules.
‘I know it’s hard, you don’t know what the person is going to say. Some people need a bit of confidence. There are other mothers who are doing it but some people will just walk away.’
The 34-year-old hopes speaking up will also serve as a good example to Jack in later life: ‘You’ve got to show them that things can be achieved,’ she adds.
‘I want to be a role model. I’ve got to be realistic about change but no one wants their child to be defined by their illness and that’s all it is.’
Jack was diagnosed with Becker MD when he was just two-and-a-half. There are lots of different types of muscle diseases and Becker’s isn’t usually diagnosed until much later. But Jules and partner Stuart had seen Jack struggling to walk for a while before he managed it at 18 months.
When he was referred to a paediatrician they were told Jack had hypermobility – a fairly common condition that means joints are particularly mobile – but Jules knew there was another test that could still be done.
‘It was a niggle and I couldn’t let go of it,’ she says.
‘The other kids all seemed to have this confidence and he didn’t. Jack went to pre-school just down the road and it would take us 25 minutes to walk there.
‘I said it’s not right and went back to the doctor. I’m hypermobile and so is my partner but it was still at the back of my mind. So I said “Why don’t you do this test?”
‘His growing problems had really been niggling me for a long time.’
The couple, from Wickham, had the test done and waited.
‘Three months later my partner got a call as he was coming home from work saying could we come into the hospital and bring someone with us.
‘I was going out of my mind and saying, “Why won’t you tell us over the telephone? It was an emotional time.
‘The doctor said what it was and that he was really sorry to have to tell us and I just broke down.
‘I’d done my homework and looked up what it might be on the internet.
‘Stuart didn’t know, he didn’t know why I was crying. The doctor said ‘‘do you want to tell him what you know?’’ and I just couldn’t. I said “You’ll have to tell him”. We were wrecks.
‘The family were great. We told everyone in the circle and let them know what the state of play was and said we had to deal with it in our own way.’
She adds: ‘It’s that grieving for a dream. Afterwards you think he’s here, he’s great. It isn’t so scary any more. No one would choose to go down this road, you’re not a bad person for thinking it. He brings us so much joy, he’s the centre of our world.’
Fighting to get Jack what he needs has become a time-consuming necessity for Jules who found little support available when he was first diagnosed.
The Muscular Dystrophy Campaign has been a great help and Jules says they wouldn’t have got through the last year without them. Parent Voice – a support group for parents and carers of disabled children in Hampshire has also been invaluable. And other organisations have come good for them too, like the Meon Valley Lions and the Bishop’s Waltham Rotary, who bought Jack a trike between them.
But there are other fights still ongoing that Jules won’t let go of until they’re won.
When they found little NHS support available for families like them but money set aside to fund a care advisor post for those with muscle-wasting diseases, both Jules and Stuart were determined to lobby for that role to be filled. They even went to Westminster and spoke to the all-party parliamentary group for muscular dystrophy.
Other care advisors have really helped families like hers – but the nearest one was in London.
‘There was a horrendous waiting list, one care adviser for all these people,’ adds Jules. ‘In Southampton, when that person is in place, they will be seeing people from all over.
‘They are a signpost for the newly diagnosed, they are invaluable. They are a great go-between. They almost digest the information you don’t understand. I looked on the internet for information and it was crushing. I will never do that again, that was probably the lowest I was and I definitely won’t do that again.
‘Talking at Westminster was nerve-racking because you don’t want to make a lump of yourself and you are talking about personal things that are important to you. But I’ve been through it, someone else is going to go through it, it’s never going to stop.
‘It’s hard now but I do think it’s going to calm down,’ she adds. ‘With the care adviser situation I sometimes think “Why did I do this?”
‘Then there’s another family at the meetings and that’s why it’s so important. It’s not going to be a miracle or a cure, it’s just someone else who will understand.’
The care advisor post has yet to be filled but interviews are scheduled to take place next month and Jules is determined not to let go until someone is in place and ready to help families like them.
Of course at the centre of all the plate-spinning is Jack, who is happy at school and full of personality. They’ll have to wait and see how the Becker MD progresses but Jules says he takes it all in his stride.
‘He’s always my priority, he always was, with or without this,’ adds Jules.
‘If I can do something for someone else whether it’s because it will help Jack or not, I will. Some days it’s like wading through treacle. Sometimes I think “Wouldn’t it be nice to just sit down?”
‘Every mother questions whether they are a good mother. But I feel guilty because there’s always something I can do for him. You just think about your child and think “I should be phoning so and so”.
I just want him to get what he deserves.’