Joseph with his family
Living with and loving Joseph
Imagine how your life might change if you were told your son had a life-limiting illness? How would you react? Would you savour every day with them or try to carry on with life as normal?
Joseph suffers from a condition called Duchenne Muscular Dystrophy, a muscle wasting disease that eventually causes the diaphragm and heart to stop working. Joseph isn't expected to survive much beyond his 20th birthday - so as a parent, how do you think you might cope with hearing that news?
Paul and Claire Franks are from Wellington and were forced to face that news just two years after their son was born. They knew something was wrong quite early on. Joseph's muscles weren't developing and he struggled to hold himself up.
After initially being told that they were being over sensitive they got the diagnosis. It came as a shock to both of them: "All those dreams and expectations that you have of your son are taken away and when you're told that the future you'd anticipated has been taken away. You're just gob-smacked, you don't know what to say, you don't know what to do, you don't know how to react."
Nevertheless, the couple decided to get on with their lives, keeping things as normal as possible. But they reacted to the news in different ways. Paul instantly wanted to do something to raise awareness of the condition, running a marathon within months of the diagnosis and arranging charity events. Claire on the other hand, made it her mission to find out as much as she could, reasoning that if she knew all the gory details, nothing in the future could shock her.
But as the condition is genetic, Claire was plagued with thoughts that she was to blame: "I felt at first that it was my fault, until we had tests to prove that I couldn't have known, wouldn't have known. So then I suppose it makes it a little bit easier to live with. But as a mum I think you still do blame yourself."
Joseph's condition has been punctuated over the years with significant milestones of deterioration: Not being able to get off the floor on his own was then followed by not being able to get out of a chair. Now Joseph's forced to use a wheelchair for part of the day. He will soon have to use a wheelchair full time.
Claire believes that taking steroids has helped to keep Joseph on his feet as long as possible, but it was a difficult decision to go ahead with the treatment: "It was a big dilemma whether to or not, but I think as a parent you just do what you think is right. That's all you can do. You can't beat yourself up about it. Yeah, we are pumping him with drugs, but at the time the evidence was there that it does help and I still think now that it's helped."
As yet, there is no cure for Duchenne Muscular Dystrophy, but Paul and Claire have chosen not to spend their lives hoping and wishing: "We obviously know that our time with Joseph is limited... and the thought that my son is going to die before me is there... but we try not to think about it. We try to live as normal a life as we can and give our children as normal a life as we can, whilst understanding that he might not be here in 10 years' time. But we try to push it to the back of our minds and get on and be normal."
last updated: 24/04/2008 at 18:00
Have Your Say
Do you have a family member who has a life limiting illness? How have you coped with coming to terms with it? Have your say...