Trying to explain the impact Duchenne has on a family is difficult, trying to do the same about your own family is almost impossible. Those effects don’t just have an Impact on the immediate family they stretch much further along the family tree and also have a ripple effect on friends. The impact it has is not just an emotional one either, self-esteem, financial, relationships, mental and physical health are other facts that need to be taken into account.
Archie was diagnosed in 2008; I had a small construction business employing five staff. Lou worked as the company secretary and helped in the local infant school. Everything seemed good, little did we know. After several months of tests we got the news that we were dreading, Archie had Duchenne. The next few months were a bit of a blur, I stayed at home to support Lou and Lou was there for me. Over the next couple of years we became very reclusive, barely getting out the car at school drop off, avoiding friends in the supermarket, sometimes not even answering the phone. In hindsight maybe we should have let those people help, but at the time we wanted to grieve on our own (grieving is not too strong a word).
Here are some of the effects of having a child with Duchenne.
We have had to move house because our last house was not suitable for a disabled child, the house we bought had to be altered and adapted to suit his needs of today and for the future. We changed our car so it was easier for him to get into. Because of the numerous appointments, Lou gave up working at the Infant school and cut down her hours of secretarial work. Trying to be as supportive as possible and attending as many appointments as I can, my business has reduced in size, consequently the turnover and profit have almost halved. These are just a few of the financial costs incurred in our family, they don’t take into account the many extra items you take for granted like travel expenses (Taxi bills because he can’t walk far), extra heating bills (he feels the cold more), better quality shoes (which help with his walking), more school trousers (because he falls over more often), physio sessions (once a week to keep his muscles supple), Swimming lessons. I have attached a brief breakdown at the bottom of this letter. Putting the financial impact to one side, let’s look at the emotional impact. Being told you child will probably die before you, has to be the most devastating thing you can tell anyone. The impact it had on us could not be put into words. Both our personalities have changed; we are less compassionate, probably more selfish with our time, if we want to do something, we will generally do it and not worry too much about the consequences. We’re angry, we look at other families and wonder why us? We blame ourselves, even though we know it wasn’t our fault. We are more negative towards others; often letting people down because we would rather have a quite night in with the boys instead of going out.
The emotional effect it is having on Archie’s brother is only just becoming apparent, he is struggling at school, he did have a councillor he could talk too but the school have removed that facility. He struggles with concentration, had a breakdown at school last year after googling his brothers condition. When you try to talk to him you feel he doesn’t want to talk about it as it will upset us even more. As parents should we feel guilty we can’t spend more time helping him? Archie never ceases to amaze us; he is academic, enjoys school and loves playing with his friends. He still enjoys playing football with his mates at school and on a Saturday morning. His friends accept he is much slower than them, so protect him from other teams (they are amazing friends). Archie hates to be the centre of attention. At school he has to sit on a chair at assembly rather than the floor with his friends, he is taken out of lessons for physio on a daily basis and other appointment during each month from his speech and language and his occupational therapist he is also driven to and from the sports field this makes him feel he is different.
At sports day last year, the school said instead of running in the races would he prefer to hold the finish line tape (talk about patronising).He suffers from extreme mood swings and these are more noticeable towards the end of his 10 days on/10 days off steroid prescription. Every so often he will ask us questions about his condition; does it only affect my legs? Do I always have to take this medicine? Why do I have to wear the night splints? We always try to answer as honestly as possible but try to protect him at the same time. Nonetheless, Archie carries on and always has a smile on his face. In time I hope that smile everyone remembers him for doesn’t fade away.
Archie’s condition has had a large effect on our relationship, not only to each other but to others as well. It has tested our relationship, we are permanently tired, often up early to give physio to Archie and up late catching up with household chores. During the day there are always doctors, Physio, orthotic appointments to attend or sort out. Both our patience levels are low so often row over trivial things. There has been an effect on other members of the family too. Archie’s grandparents all struggle to accept his condition. His uncle, Aunts and cousins are all supportive but have their own families to worry about. We have some amazing friends who are always there for us but you sometimes feel they try to protect us as a family. Recently, Archie was excluded from a friend’s birthday party, because ‘skiing’ would have been to dangerous for him! How do you think that made him feel?
We are always conscious of the clock ticking, we try to do as much as Archie’s condition will allow. We have an imaginary bucket list that we keep adding too. Having a son with Duchenne has made us do things we may not have done if not for this awful condition. We have raised lots of money for research into Duchenne, been to amazing places on holiday, places we may not have visited and met people that others would only dream of meeting. It has made us stronger and more determined to give our boys every possible opportunity to be happy.
There have been times that have very dark, finding it hard to carry on. Louisa especially has had lots of help through councillors. As a mum there have been times she has been at rock bottom, been emotionally unstable which can be very difficult to cope with, our children should not have to witness this as they haven’t done anything to deserve it.
Translarna is the first drug that has given us and the whole of the Duchenne community real hope. We understand it is not a cure but it will slow the progression down and give Archie and other boys with Duchenne more time to enjoy playing with their Brothers, sisters, friends and family, something most of us take for granted. As parents we would do anything for our children, all we are asking you is to help us to help them...
Thank you for taking the time to read our story
Gary and Louisa Hill