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29 October 2014

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You are in: Shropshire > People > Your Stories > Living with and loving Joseph

Joseph with his family

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
created: 30/07/2007

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...

The BBC reserves the right to edit comments submitted.

Will Cooper
Our grand daughter was born in 2002 and at 3 months old was diagnosed with SMA spinal muscular atrophy, we were informed that 80% of those diagnosed did not reach their 1st birthday & 100% do not reach their 2nd. Georgie sadly passed away aged 15 months, however we all made the very most of that time, with help from the various groups that support familys at these times.I would like to add a great thanks to the people at Hope House in Oswestry.My wife gave the attached speech at the 1st memorial that we attended.EVERESTI talked to Georgies Mum, Dad and Granddad about what I would say at our first Hope House memorial. I was frightened of saying something stupid about our feelings, not really knowing what other people feel about their loss, or their hopes and dreams. Until last night I watched a program about climbers wanting more than life to get to the top of Everest. I thought about what is the one thing we all have in common. We have all climbed a mountain. We all have this one thing in common.The Everest climbers, in this documentary, perceived reaching the top of this mountain to be the ultimate goal on their lives. They felt that they had achieved everything in their lives if they could get to the top, the nearest place to heaven whilst still standing on this earth. I listened to the stories about people being left behind on this mountain. I was upset beyond belief. When weak climbers were thought not to be able to get up or down this mountain, the strong climbers played God. They thought it was morally correct to leave people on the mountainside to die alone. The decision, nearly 99 percent of the time was to leave the weakest there on their own and to carry on to the top of this mountain. The weakest were left without human comfort, without kind words, without being able to give a message to their loved ones. The triage decision was to let them die because they would not make it to the top and they would not be able to get back down to base camp.God, all of us should have been so lucky to be able to make decisions about climbing mountains. Our mountains started when some doctor told us we had to start to climb. We had no options, one day we were at base camp with no intention of going anywhere, the next, we wake, after our numbness and have no choice but to start to climb. We all started climbing; always knowing we were never all going to reach the top of our mountains together. But all of us here today kept on climbing regardless. There were days where wanted to stay in our tents, stay snug and warm in our sleeping bags, the snow would be relentlessly beating down around us, the wind felt like it was cutting us to the bones, but all of us kept on going. The climbers on mount Everest said it became hard to breathe after a certain altitude, we all found it hard to breathe from the day we had to start climbing. Then there were days that all of us, as a team, could see across the world so clearly. The view was so wonderful, skies were so blue, clouds were so white, the sun was shining, and we held hands and thought we were blessed, chosen to make this difficult journey together. When we got so far up our mountains, there where Sherpas to help us. When the mountain looked so high and so steep we did not think we could make it, even with the team we had, they came out of the mist, put up the ropes to help us another step, gave us sleep, emotional nourishment, strength to carry on our difficult journey. On we went again. The Sherpas on our mountains are called Hope House Staff. Didn’t interfere with our journey, just helped us on our way. I am sure, that without them our climb would have been impossible.Then the difficult day comes when we no longer have to climb. The time comes when we have to leave the one we love the most behind on our mountain. But we are proud climbers, we did not try to leave, we stayed however difficult it was, all of us stayed until the end.It has only been six months since we had to leave our little girl on our mountain, none of us w

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