Teenager Joe Driffield lives with Duchenne muscular dystrophy. Hear from his family how a gift in your Will can help families like his.
Susanne took Joe to the GP on her day off. She didn’t know at the time, but now she knows [the clinician] was going through all the different symptoms of Duchenne muscular dystrophy.
He had Joe standing up from the floor, walking up some steps…and he said it might be muscle weakness. Then Susanne googled it, the first thing that came up was Duchenne muscular dystrophy and Joe ticked every box.
They took Joe into a different room from us and we knew Joe was being separated from us to give us bad news.
We were asked if Joe wanted to take part in a clinical trial, we wouldnt even know if steroids where a possible treatment if someone else’s child hadn’t done a clinical trial. So we decided for the boys that come after Joe its quite important for us to do our bit.
He’s got used to them over the years, steroids and tablets he just takes. He takes three tablets in one gulp and he’s quite happy with that. I think when we have the days at Leeds where he’s having DEXA scans, blood tests and heart scans he can find it quite tiring.
He’s kind of taken the lead from us. We’ve always said if this is something to try then he’s gone with it. Now he’s a little bit older we ask him how he feels. We’ve always been quite open and honest about his condition and he’s taken it really well as nothing has come as a suprise to him.
Obviously there is no cure. Treatments that have come through have been for different types of Duchenne. Some things that work for some boys don’t work for others. But i think overall managing of the condition has improved a lot.
I think we are very positive. [The diagnosis] has made a huge difference to the way we approach everything really.
When Joe was diagnosed we both worked 50 hour weeks and Joe was going to pre-school clubs. Since that diagnosis Susanne’s changed career to work from home. Darren gave up work three years ago to become Joe’s full time carer.
We’re poor in monetary terms but we’re rich in so many other ways. Darren is there for everything. Whereas previously we were focused on getting the next best car or the next best house actually now the three of us are bit of a team. We go on holidays or go out.
Its about making memories. We wish Joe didn’t have [the condition] but then again we wouldn’t change what we have now.
When he started secondary school we said to the school that, yes, we wanted him to academically do well. But it’s more about him being happy at school. He would like to get a job but things are more difficult because he fatigues much easier.
For us we just want him to be happy, whatever that looks like for him.
Since the diagnosis Muscular Dystrophy UK has been there. The regional care advisor from leeds came out to see us when we were at our lowest point. But she gave us real hope for the future and then we got involved in fundraising.
The charity has helped and supported us in getting the equipment and always on hand to answer any questions and get information.
It was important for us to include a gift in our Will to help the families that come after us. Things have moved on so much already in the last 10 years since Joe was diagnosed. The thinking is that our gift will go into research to help other families.
To anyone thinking of leaving a gift in their Will to Muscular Dystrophy UK it doesn’t matter how small or how big it is it will make a difference to families like ours.
A diagnosis of a muscle wasting or weakening condition shouldn’t define anyone’s story.
That’s why we’re funding groundbreaking research that will make long term treatments – and even cures – a reality.
For over 60 years, we’ve helped people to stay independent, grow careers and start families. We’ve come a long way, but it’s not enough.
Together, we can change the story for good. Leave a gift in your Will.
