Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

Duchenne – without the sugar-coating.

 

FaceOfDuchenne edit

(NOTE – This blog entry is mainly for family and friends who need to understand what it’s actually like to live with Duchenne, in the hope that it will foster a greater understanding and compassion for what we are all living with).

Look at these beautiful and happy faces. These are the faces of Duchenne.

Some are so young, some are older, and sadly some are now running free in our dreams and amongst the stars. But they all have something in common. They are all kids with Duchenne Muscular Dystrophy.

Imagine this . . .

You are lying in your bed, unable to move. Your arms and legs feel like lead. You are hungry and you need to go to the toilet. But you can’t move. You can’t even move your arm to reach a button to notify anyone that you need help. You keep on willing your arms to move, but they don’t react. Your mouth is dry and you need a drink of water – where is someone to help you? And then you are hit with the agony of an itchy nose. Aaaarrrggghhh!! It is driving you insane because you can’t move to scratch it. Oh my god, will someone please come and help me! You call out, hoping someone will hear you. And then, from around the corner, your mother appears. She looks tired from getting up 13 times last night to help you turn in bed, and yet her face still lights up with the most incredible look of love when she sees you. She tends to your needs, she kisses your face, she puts your arms around her neck so you can feel what it’s like to hug someone, and then she pulls up a chair so she can sit with you and spend quality time watching your favourite television show or playing video games together.

And this is a good day.

When we were first told that James had Duchenne Muscular Dystrophy, we were devastated. We couldn’t comprehend the fact that our son would end up in a wheelchair or his life would be cut short. But that’s only part of it, and I’m beginning to realise the actual reality of this disease.

So what is Duchenne Muscular Dystrophy (DMD)? Generally, DMD is not diagnosed in infancy. According to Wikipedia, symptoms usually appear in male children before age 5. Progressive proximal muscle weakness of the legs and pelvis associated with a loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include enlarged calf and deltoid muscles, low endurance, and difficulties in standing unaided or inability to climb stairs. As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are fully wheelchair dependent by age 12. Later symptoms may include abnormal bone development that lead to skeletal deformities, including serious curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for patients afflicted with DMD is around 25, but this varies from individual to individual. (Thank you Wikipedia!) It’s a disease that affects 1 in 3500 baby boys. And even though it’s genetic and sex-linked, it can happen to any child through spontaneous mutation at conception (in over 30% of cases – my son was one of the these), and it can also occur in girls (although rare).

Many people incorrectly assume that a child with Duchenne will lose the ability to walk, and nothing else. But nothing could be further from the truth. The reality is, Duchenne affects pretty much every single part of their body. Think about it – there are muscles in our legs, our arms, our torso, our neck, and of course our heart and diaphragm are muscles. Duchenne ends up affecting every single muscle, even the eyelids. And it’s when the heart and diaphragm are affected that death will eventually occur.

I asked a good friend of mine, 16 year old Dan (real name omitted), to write what his day is like. This is what he wrote, and it is confronting, to say the least. As parents of a newly-diagnosed or young child with Duchenne, we never actually think too far into the future. We never think how it will be when our child is a teenager, or even how they will feel. I am thankful to Dan for being so honest with me, knowing full well that what he wrote would most likely break my heart and force me out of the Cave of Denial, where I have been dwelling. But his reality, and that of many other Duchenne kids, has to be described so others will understand why there is so much urgency to find a cure and provide the best for our kids.

“What’s DMD? It’s the illness I have. Here’s what some of my day is like. Every morning I wake up and call for mum, because I can’t move on my own. While I’m waiting I try and wriggle my body to move myself, but it’s useless – nothing happens. Mum comes to me and gives me a hug and wipes the sleep from my face and sits me up in bed. It makes me feel sad most days now because I can’t lift my arms up to hug mum back and that is what I miss more than anything.

I have a cup of tea, though not like you probably do in a mug or cup. I have mine in a beaker with a straw (a baby beaker), because DMD has taken away the power in my arms to lift a cup to my mouth. It’s hard to eat now as well – it takes me ages because I can only use one hand. The other hand works to hold the working hand up – that’s hard to explain really, but I can move my fork or spoon just enough to get food into my mouth.

When I’m ready to get up, I can’t just get up. Mum has to wash me and dress me, then put a sling around me and hoist me up out of bed, and then position me in my chair. As the day goes by I know I’m asking my mum to do so much for me. If I need to scratch my nose I have to call her to do it for me. If I want a drink I have to call her to get it for me. If I want to go on my Playstation 3 or laptop, I have to call mum to set it up for me. I spend all day sitting down. I’ve forgotten what it feels like to have the wind blow around my back when I go outside, I only get that now when I’ve had beans for tea . . . LOL!

I do get angry sometimes and ask why have I got this shitty DMD. I hear people moan about stupid things and think “If only you knew what it feels like to be trapped in a body that won’t move, even though in my head I’m telling it to”.
I have to ask for help with pretty much everything I want to do and that gets very annoying. I can’t do the simple things like scratch my nose when it’s all itchy, and I hate having to ask for help all the time, but that’s how my life is.

When I was little I used to have a lot of fear – fear I’d fall or fear someone would knock me over. Now I’m older, I have a fear of being ill. A cold can go to my chest and then I spend ages getting better. This year I was very poorly and had to go to hospital because I can’t cough strongly enough to get rid of the mucus that stays on my chest. It took me nearly 5 weeks to start to feel better. I now have a machine to help me cough, but I still worry every time someone around me has a cold that I will get it and be poorly for weeks. Just to get over a cold. I know I’m going to need more drugs and machines to help my heart and lungs, and I’m ok with that because it’ll keep me well so I can enjoy every day that I have.

My body is pretty much useless, BUT I enjoy every day that I have because I know that I may not have that many days to my life.

I wish it wasn’t like this, but it is so there’s no point moaning. My dream is though that one day a cure will be found and no more boys and girls will have to live with this shitty illness ever again. I say “living with” because I hate it when I read “suffering with DMD”. I don’t suffer, I live with it.

My favourite song is “Always look on the bright side of life”, and that is what i try to do. I have days when I get angry about everything and I have days when I get depressed about not being able to do what I want on my own, but mostly I enjoy my days. I can go on my PS3, laptop, and I’m getting into photography. Even though I can’t pick up a camera myself, I can tell someone else what I want and then take the shot by remote. My Gran always told me “Where there’s a will, there’s a way” and it’s true”.

Such a mature attitude from a boy who should be out kicking a ball and playing with his mates, getting up to all sorts of mischief, and gearing up to finish school and move into the world of grown ups. Something we all take for granted with our children, but experience has taught me that a “normal” future like this isn’t always a given.

There really is no way to sugarcoat the reality of Duchenne. It sucks. Big-hairy-balls-kind-of-sucks. It’s not as simple as just never being able to walk again – if only that was the case. It affects everything, from the way our kids live their lives, to the extra care needed by us (their parents). It affects families financially, emotionally, mentally, and spiritually. Marriages crumble much harder and faster than average, because of the overwhelming effect it has on the entire family.

We never asked for our kids to be afflicted with such an insidious illness, and our children most certainly never asked for it. And yet here we are, mortgaging our houses and going into huge amounts of debt to pay for expensive medical equipment, breathing machines, air ventilation units, modifications, wheelchairs, accessible vehicles, treatment, and therapies, many of which we don’t receive funding for, or funding is very little. Our kids need beds that turn them throughout the night, beds that most families will never be able to afford as they cost tens of thousands of dollars. Families need wheelchair-accessible vehicles, and they don’t come cheap. Nor do the modifications on existing vehicles. We recently received a quote to modify our car – it was$32,ooo!!! Most families don’t have $1,000 lying around, let alone $32,000. And yet we have to somehow find that money just so we can transport our son from one place to another.

Medical therapies and treatment are also costly, both financially and time-wise. With a (short) lifetime of physiotherapy, occupational therapy, speech therapy, hydrotherapy, bone-scans, cardiac assessments, opthamology exams, psychologists, counselling, and numerous other specialist appointments, our hip pockets take a hit and our diaries are full. And that’s even with top cover health insurance. We are lucky here in Australia to have many things covered, but there are still so many out-of-pocket expenses. Then there are drug therapies, trials, hospital stays, vaccinations, stomach feeding-tubes, assessments, and reviews. There are IEPs to be done at school, and constant dialogue with both teachers and special ed support workers. Steroids cause weight gain, rages and meltdowns, reduced bone density, cataracts, and numerous other side effects. Autism is common, as are other behavioural problems. Most kids develop cardiomyopathy or respiratory problems. And severe scoliosis is a serious and common problem, resulting in full spinal fusion. Imagine having to go through all that, either yourself or with your child.

I think one of the most heartbreaking aspects of having a child with DMD is the affect it can have on marriages and family life. Gone are the normal family activities, like bikeriding and hiking and snowskiing. Partaking in any of those activities means that the child with DMD has to sit out and watch. Even family vacations, and particularly camping, ends up becoming a thing of the past. Our son James is now 12 years old and spends most of his time in a  wheelchair or on a sofa/sitting down. We made the decision that they years before he goes off his feet for good would be spent exploring our beautiful country, showing the kids sights and experiences that we remember growing up. And it has been expensive, but it had to be done sooner rather than later, because once he’s fully wheelchair-bound it will all be too hard.

There will come a time when going on holidays will mean taking equipment to make James’s stay more comfortable and less back-breaking on us. Hoists, electric wheelchairs, and profiling mattresses are just for starters. Not to mention the fact that his wheelchair will take up pretty much the entire rear of the car, leaving no room for luggage. And even before we get to that stage, there’s still the matter of finding accommodation that is wheelchair accessible, without an exorbitant price per night. Not so easy, let me tell you. As for visiting family and friends, that can become tricky. James’s grandparents live in a house in Sydney, a house where the entrance is up a flight of stairs on the second floor. On previous occasions, we have been able to carry him up, but he’s so heavy now that we can barely do it now, let alone for much longer. I know some would say “put him on a diet”, but that’s difficult when he’s also on steroids (which increases water retention and appetite) and he can’t exercise. But my point is, visiting family and friends will quickly become a thing of the past as well. Unless their home is wheelchair accessible, which many homes aren’t. In the near future, we will not be able to visit the kids’ grandparents, or most of our family and friends. We will miss out on things like birthdays and christmas celebrations and other family occasions, all because our child won’t have access. And that sucks. For all of us.

It’s often difficult for extended family and friends to understand the difficulties in our lives compared to theirs. I have been told by some that “you’ve changed” over the past few years. Well, I think it’s safe to say that anyone who doesn’t change when hit by something like DMD is both inhuman and devoid of all emotion. I have changed, I’m not the person I used to be. I miss the person I used to be, and I know I will never see that person again. Whereas I used to be happy and carefree, now I’m just scared and sad. And I’m on a mission to give my son (and my other 3 children) the best life possible, even if that means upsetting others in the process. I’ve learnt that life is not a popularity contest, but I’ve also learnt that life is short and uncertain, and time is too precious to waste. Even though it’s reported that kids with duchenne are living into their twenties and thirties, that seems to be the minority. The fact is, many kids with Duchenne are dying whilst they’re kids.

As my friend Jenn (who has two boys with Duchenne) wrote, living with Duchenne means a lifetime of doctors, medications, appointments, school struggles, expenses, and heartbreak. It puts mothers and fathers under stress that no marriage should have to try and survive. It means siblings get left out, pushed aside and ultimately left behind by their brothers illness. Duchenne alienates family members and rips apart friendships. Duchenne hurts, both physically and emotionall . It is a backache from too much lifting, and a headache from too much crying. Living with Duchenne means heartache, helplessness, fear, and grief. It is a lesson on patience, acceptance, and loving even when it’s hard. And it gets bloody hard, for all of us.

So if you are a family member or a friend of someone living with Duchenne, please try to remember what they are going through. Please remember that they need your support, and they need your love. Most of all, they need you there when times get especially tough or overwhelming. Please don’t judge them, and don’t put such high expectations on them, and please try to show both understanding and compassion. Let this blog be a turning point for you, so that you now truly understand what “living with Duchenne” means and use your knowledge to make a difference. And never, ever, ever make us feel bad because we’ve changed and are no longer the person we used to be. The more understanding and support we have, the more awareness and funds we can raise, and the faster research will progress. And the easier our lives will (hopefully) be.

And the next time you have money to give, think about the kids in the photo above and give generously to Duchenne. Because every single dollar can make a difference. And every single child that lives with Duchenne deserves not to.

POSTSCRIPT

I wrote this blog over a year ago. After it was published, I received a message from an anonymous reader asking why this post is so negative.

Why focus on the negatives?

Because everyone seems to paint a picture of men living into their 20s and 30s, when I already know of so many boys who haven’t even made it to 20. For every person living with Duchenne who makes it into their late 20s or even their 30s, there are a dozen or more who don’t.

The fact is, Duchenne still is 100% terminal and that’s not changing in a hurry, no matter how much hope we can all have for research. Yes, it’s a promising time for some, those whose kids will possibly benefit from exon skipping, but that’s still not a cure it only helps a small percentage of the kids.

I know so many parents, hundreds in fact, who feel the same way I do. And my 16 year old friend wrote how he feels. Yes, there are young men out there who are quite “happy” with their lives, and whose parents are making the most of it. As parents ourselves, we try to make the most of it in terms of doing as much as we can and seeing as much as we can, and helping James to have a lifetime of memories in a short time. But for most of us, there are crippling expenses, siblings who are pushed aside, and lives that are compromised. And there are kids with Duchenne who are being bullied because they aren’t “normal” like other kids, kids who watch others playing sport and wish like crazy that they could at least move their legs and walk let alone run.

Most of us live “happy” lives, we have to make our lives as happy as we can for our kids. But the fact is, many of us cry ourselves to sleep every night because of the helplessness we feel and the grief of knowing what this disease is doing to our own beautiful children. Many of us are on medication just to get through the day. Many of our marriages have failed because of the stress it puts on us as individuals and partners.

I am sick of Duchenne being sugar-coated, and made out to be less serious than it actually is.

I never knew exactly what it was going to be like, how difficult it was going to be for my son and the rest of my family, or the impact it was going to have on extended family members and friends not understanding.

I never realised how much of a strain this would have on us financially, and how every decision we make is based on Duchenne – where we live, what sort of car we drive, where we go for holidays, what sort of job my husband can take so he has flexibility to be around when he can.

I never realised that taking my son to a rugby match, whilst making him happy, would also make him so angry because he has a body that is failing him.

And I never knew what sort of effect the steroids would play on his behaviour, and how that behaviour affects his relationship with his siblings and his school friends and us (his parents). And it’s not his fault, so I can’t get angry with him in the way I would with my other kids – I have to learn to deal with his behaviour in other ways.

This post was not meant to be positive or sugar-coated, it was written from the reality of myself and so many others. This is how duchenne affects so many of us. And most of us wear a mask out in public, so others don’t know what we are thinking or feeling or dealing with.

This post is to family and friends, to explain why we are angry and why we cry and why our priorities are different to those with healthy kids. This is for them to understand US, and to have some comprehension of what our lives are going to be like, to encourage them and teach them that we need their support and understanding.

This post is so those family members and friends, who resent us because we’ve changed, might actually understand why we’ve changed and show a little more compassion and support.

This is for those family members and friends who get angry and upset when we can’t attend family functions because the venue is inaccessible, and have no idea of how accessibility plays a big part in where we go and what we do. This blog is not for those going through Duchenne, although I have received so many emails and messages from those people who are affected by duchenne to voice their appreciation and for finally making public how so many of us live our lives.

Whether research is moving ahead or not, this is how we feel. And let’s face it – research isn’t moving ahead fast enough. Probably not fast enough to save most of the boys in that photo.

I’m a realist. I say it as it is. And I don’t sugar-coat.

  • Beth - Sharyn you have written down so much of the frustration and pain that my son and I feel every day. Thank you. It’s nice to not feel so alone.ReplyCancel

    • Sharyn Thompson - Thank you Beth. I just think so much is said about research and how people make the most of the time they have, but educating non-duchenne community about what it’s really like on a day to day basis is extremely important. xxxxReplyCancel

  • suzan norton - Sharyn. This is very good. As a DMD family, we still enjoy camping. We rent cabins all together which have steep ramps on the deck which lead into the cabin. My parents, brother’s family and my 2husband sister’s family all do it every summer. All the cousins are together and it is a blast. We bring 220 ventilators and an iv pole, cough assist, suction machine, hoyer lift, bedding etc!! So much work but so worth it. I shampoo him on the deck. Thanks for posting this. Best to your family.ReplyCancel

    • Sharyn Thompson - Thank you Suzan. I have hope that holidays will not become a thing of the past, but with only one car and 4 children (plus a power chair and all his equipment) it will most likely prove to be very difficult. But I won’t give up hope. I will do everything I can to make sure he (and my other 3 kids) experience everything.ReplyCancel

  • debra hindley - Love this post, brilliantly written, open, honest and heartbreaking all in one, thankyou for sharing xxReplyCancel

    • Sharyn Thompson - Thank you Debra. Going by posts I have received off others, it sounds like it is getting the message out there and people are starting to pay attention.ReplyCancel

  • Ben - Hey, never seen DMD described like that before. As a sufferer myself (or liverer as that boy would say!) I’ve only ever seen like what you get on wiki, or articles in the newspapers and stuff explained simply. Nothing about the feeling of living with it, and how it affect lives and stuff. It’s good to see it and something I wish more people understood.ReplyCancel

  • Allison Kuller - Sharyn – Everything in your post is so heartfelt – our son passed away after a leg break at age 14 in 2010. He was not to the point of Sam, but we were headed there. I try and keep talking about Duchenne to people as much as possible, but even people who knew us and Blake for years still had so much of it wrong. I will keep your James in my prayers. Duchenne sucks, there is no question about that. Thanks for sharing – AllisonReplyCancel

    • Sharyn Thompson - I am so sorry to hear about your son, Allison. Fourteen is so young, and so unexpected. My heart breaks for you. Thank you for taking the time to comment, and hopefully one day a cure will be found to save a new generation of kids living with Duchenne, and spare other parents the grief that parents such as yourself carry for the remainder of your life. xxxReplyCancel

  • sharon hampson - i have just read the blog i knew in my heart what is going to happen to my little nephew ryan but just reading it has took me over a hour as i have been crying all the way through reading it. were all doing fund raising here in england to find a cure and hopefully one day soon will get there, because life is precious my sister took him to texas to get a vecctor machine which did cost a lot of money but he is getting the benefit from it, he is walking upstairs unaided now playing in the garden and talking better and he even run a little which he has never done before.hope a cure is found soon for all the children around the world living with dmd love sharon xReplyCancel

    • Sharyn Thompson - We all hope a cure will be found, sooner rather than later. Getting the word out there, letting people know what our kids are going through and we as families, will highlight the urgency of raising awareness and funding, which will result in a cure much faster.ReplyCancel

  • Melissa Meller - Wow I cant thank you enough. I know very well that people outside of the DMD family don’t really get it, allot of the time even people inside the family dont get it. I am happy to have found sites to talk to people who do, but do wish I was able to truly tell my friends and family the journey we are headed for, I cant thank you enough for saying everything I have wanted to scream for over two years now, just so one person could hear me and I wouldnt be so alone. I thank you so very much with all of my heart for your bravery and words… xxxxx <3ReplyCancel

    • Sharyn Thompson - Thank you Melissa, I appreciate your kind words of support, encouragement and understanding. And you are never alone.ReplyCancel

  • anon - What a depressing outlook. Why focus on the end stage of Duchenne, or any other disease, for that matter? There are plenty of young men with Duchenne and their families living happy, productive lives. We’re inspired by those examples. Our lives are happy, and we spend very little time thinking or worrying about whatever medical issues we may – or may not – encounter sometime in the future, because who knows what advances will happen before we reach that stage. We play the hand we’re dealt, and we find a way to make it good for all of us.ReplyCancel

    • Sharyn Thompson - Why focus on the negatives? Because everyone seems to paint a picture of men living into their 20s and 30s, when I already know of so many boys who haven’t even made it to 20. For every person living with Duchenne who makes it into their late 20s or even their 30s, there are a dozen or more who don’t.

      The fact is, Duchenne still is 100% terminal and that’s not changing in a hurry, no matter how much hope we can all have for research. Yes, it’s a promising time for some, those whose kids will possibly benefit from exon skipping, but that’s still not a cure it only helps a small percentage of the kids.

      I know so many parents, hundreds in fact, who feel the same way I do. And my 16 year old friend wrote how he feels. Yes, there are young men out there who are quite “happy” with their lives, and whose parents are making the most of it. As parents, we try to make the most of it in terms of doing as much as we can and seeing as much as we can, and helping James to have a lifetime of memories in a short time. But for most of us, there are crippling expenses, siblings who are pushed aside, and lives that are compromised. And there are kids with Duchenne who are being bullied because they aren’t “normal” like other kids, kids who watch others playing sport and wish like crazy that they could at least move their legs and walk let alone run.

      I appreciate that you may be from one of those families that live a happy life. Most of us live “happy” lives, we have to make our lives as happy as we can for our kids. But the fact is, many of us cry ourselves to sleep every night because of the helplessness we feel and the grief of knowing what this disease is doing to our own beautiful children. Many of us are on medication just to get through the day. Many of our marriages have failed because of the stress it puts on us as individuals and partners.

      I am sick of Duchenne being sugar-coated, and made out to be less serious than it actually is. I never knew exactly what it was going to be like, how difficult it was going to be for my son and the rest of my family, or the impact it was going to have on extended family members not caring enough or understanding enough to show support. I never realised how much of a strain this would have on us financially, and how every decision we make is based on Duchenne – where we live, what sort of car we drive, where we go for holidays, what sort of job my husband can take so he has flexibility to be around when he can. I never realised that taking my son to a rugby match, whilst making him happy, would also make him so angry because he has a body that is failing him. And I never knew what sort of effect the steroids would play on his behaviour, and how that behaviour affects his relationship with his siblings and his school friends and us (his parents). And it’s not his fault, so I can’t get angry with him in the way I would with my other kids – I have to learn to deal with his behaviour in other ways.

      This post was not meant to be positive or sugar-coated, it was written from the reality of myself and so many others. This is how duchenne affects so many of us. And most of us wear a mask out in public, so many don’t know what we are thinking or feeling or dealing with. This post is to family and friends, to explain why we are angry and why we cry and why our priorities are different to those with healthy kids. This is for them to understand US, and to have some comprehension of what our lives are going to be like, to encourage them and teach them that we need their support and understanding. This is so those family members and friends, who resent us becuase we’ve changed, might actually understand why we’ve changed and show a little more compassion and support. This is for those family members and friends who get angry and upset when we can’t attend family functions because the venue is inaccessible, and have no idea of how accessibility plays a big part in where we go and what we do. This blog is not for those going through Duchenne, although I have received so many emails and messages from those people who are affected by duchenne to voice their appreciation and for finally making public how so many of us live our lives.

      Whether research is moving ahead or not, this is how we feel. And let’s face it – research isn’t moving ahead fast enough. Probably not fast enough to save most of the boys in that photo.

      I’m a realist. I say it as it is. And I don’t sugar-coat.ReplyCancel

      • Steve Geary - God Bless you….. I want to scream your words…. They are exactly the truth…. I despise the sugarcoated. Again I agree with you I will not even publicly share some of the stupid comments from people who do not have an experience with DMD (like the person asking you why so negative).
        One other area is people think MDA helps families. … they bill my insurance over $3000 for a 10 minutes stethoscope check up, we have received nothing for no cost or any assistance getting any medical equipment.
        You are 100% right in ALL your wordsReplyCancel

  • Lisa kirby - Well broke my heart sad but true.
    Just wish ppl who are or have been close to you could understand more why you can be like you are why they don’t always come first and why you forget or why we as mothers may hav changed xReplyCancel

    • Sharyn Thompson - Thank you Lisa. Unfortunately, some people are too selfish to see that other people are in need of support and help more than themselves. And family aren’t exempt from acting that way, as sadly it’s often family that are the worst.ReplyCancel

  • Clare Roberts - Well done Sharyn for being totally honest, and for putting this together to help other DMD families.
    I am very proud to say I am Sam’s cousin, he is an inspiration to us all, as is his Mum Emma. I have 3 healthy boys, 2 of them teenagers and am often tearing my hair out over them. It’s times like this that I think of the alternative. I worry about petty things and remember the worries that Emma and Sam, and of course all of you have.
    Emma and I were very close when we were growing up and shared the same dreams of a home, husband and children, I often think of how different our lives are now even though we both have what we dreamt of. I also have asked “Why Emma?” as I’m sure she has at times and all other DMD parents have. My only answer is that Emma has been blessed with Sam, and Sam with her, I can’t put into words how special Sam is and Emma is the most caring person I have ever had the pleasure of knowing.
    Even having someone with DMD in the family, I am very ignorant of the effects of DMD. There have been times that Emma has said something that hadn’t even crossed my mind as being a problem. When I first read Sam’s piece I sat in floods of tears but I was also pleased that I had an insight of his “real” life. I get extremely angry when I hear of the struggles they have with various agencies for equipment etc. Sam has been stuck indoors for a lot of this year because he has had no wheels. Appointments are constantly cancelled or postponed, I often wonder if these people actually have a very good reason for wasting Sam’s precious time.
    Anything that raises people’s awareness of this terrible illness can only be a good thing and hopefully more will be done to find a cure or treatment, and more help given to enable these kids live a better life.ReplyCancel

    • Sharyn Thompson - Clare, both Sam and Emma are very special. And very good friends of mine. I am so glad they have you supporting them. Family support is everything, and something I don’t really have.

      Thank you for commenting, and for your support, especially to Sam and Emma.ReplyCancel

  • anon - “This post is to family and friends, to explain why we are angry and why we cry and why our priorities are different to those with healthy kids”

    Really. So that’s why you’ve now posted it on the PPMD site, where newly diagnosed parents, and boys seeking to learn about the disease will see it. Awesome. You have no idea how much pain you will cause with this. I hope that makes you happy, and you recieve some of the pity you’re so obviously seeking from others.ReplyCancel

    • Sharyn Thompson - Funny how you sign on with Anon – too cowardly to show your real name?

      Last I heard, I was allowed to post anything I want on PPMD. Plenty of others do. Parents post about how their sons have died, how difficult they are finding it to get through the day to day of living with Duchenne. Do you post on all of their blogs as well? If we can’t post on places like PPMD, then where can we post? Do you suggest that all parents who have lost a child go and post elsewhere? Do you suggest that all parents who are struggling with diagnosis or their child’s behaviour, or the effect of steroids on their behaviour, or the struggles with post-spinal fusions, or the lengthy stays in hospital when they get a common cold and it goes to their chest go and post elsewhere?

      And I have had parents of kids with Duchenne email me personally THANKING ME for putting out there what Duchenne is REALLY like for so many families. They have passed it onto family and friends, in the hope that they will understand and show the support that many of us are lacking due to lack of understanding. I’m not seeking pity, I’m trying to get others to understand. You might like to sugar-coat everything, pretend everything’s hunky-dory, and act like it doesn’t affect you. But it HAS affected ME and it HAS affected so many others. And that’s a fact. Our own families don’t understand, and how will they when all the information out there is pointing to a cure, or a very real treatment which we know that won’t happen for YEARS!

      But you have won. I have removed the post because I can’t be bothered dealing with a person like you, a person who tries to make me feel bad because I write the truth from my perspective, and the perspective of many others. No doubt you are someone I know, and that’s why you have signed on as ANON. If you are a friend of mine on Facebook, I would hope that you will delete me and just leave me alone. It’s a free world, I can write what I want to write, and I can write the truth without all the positive crap that I constantly see. The general public need to see what duchenne really is, they need to know that kids are dying in their teens, and they need to know how big a struggle it is and how expensive it is on families so that they might donate just so poorer families can have access to more respite and equipment. I researched before I wrote all of this, I asked many families for their input. And this was pretty much the response I got, so I put it all into my blog. And if you don’t like the truth as it applies to so many, then I really don’t care.ReplyCancel

  • laurie webb - As a grandma of two boys, Austin and Max Leclaire, I so thank you for your honest and candid article. It speaks to everything that I can’t say outloud without crying. Please don’t waste time responding to the few who criticize. Most of the feedback has been very appreciative for saying what the rest of us can’t voice. Thank you, and keep up the good work.ReplyCancel

    • Sharyn Thompson - Laurie, you are very welcome. And thank you for your words of encouragement and support.ReplyCancel

  • Donna Schneider - Hi…I am Donna Schneider, mother of Ian, who is 10 and has DMD…I wrote a letter very similar to yours …you can read some of it on Cure Duchenne website…some friends have asked to read my entire letter…some get it and others still don’t. A ‘friend” actually told me that I should let Ian sit at places that are difficult for him to maneuver and watch all the kids run around and play so my husband and I can have fun…can you believe that?? And she said that after reading my letter. She rolls her eyes when I talk about the difficulties we have with teachers and principals. She said she doesn’t see why DMD has to get me down and that she knows a woman who has cancer and is always happy and smiling. I don’t share my letter with many people, but I would be willing to share it with you.
    To those who think we are seeking pity, I say…you are not worth my time for one second.ReplyCancel

    • Sharyn Thompson - Donna, I would love to see that letter. Where can I read it in its entirety?

      So many people don’t get it. They don’t realise that we all cope differently in different situations. And they might think they know, but they really have no inkling how we feel unless they could walk in our shoes.

      Also, cancer these days has a good survival rate, where as Duchenne is 100% terminal.

      Are you on Facebook? It would be nice to chat sometime.ReplyCancel

  • Christina - I tend to be more positive and optimistic, but there are days I just want to scream from the overwhelming crap that affects my son and family. It’s the roller coaster of our life with Duchenne in it. It’s not always positive and optimistic in our household, and I think it should be OK and accepted (especially from the Duchenne community) that we all have bad, negative days – who wouldn’t? We’re human, and sometimes denial is a necessary evil to just get through the day. But, we just keep moving forward because what other choice do we have? It’s not a place we can stay forever, but its real. Thanks so much, Sharyn. I really appreciate the honesty.ReplyCancel

    • Sharyn Thompson - Christina, you are very welcome. I see your facebook posts and I know you are mostly positive, but I’ve seen you sad before as well. It’s only natural to have sad times. I try to be happy, and often I will succeed and actually forget, but then we come home to bathtime or massage time and reality sets in again. And then I remember. It would be lovely to go an entire day without thinking about it. Just 24 entire hours would be bliss.ReplyCancel

  • Ivy Scherbarth - Dear Sharyn,
    I see that one of my favorite books from my childhood is as true now as it was then: “Alexander and the Terrible, Horrible, No Good, Very Bad Day” by Judith Viorst, Ray Cruz (Illustrator). As the various every-day disasters occur to our protagonist, he repeatedly declares that he is moving to Australia. In the end, his mother comforts him by saying that “some days are just like that, even in Australia.” Seems like some *lifetimes* are just like that! Nevertheless, as hard as Duchenne is, there is something absurdly funny to be found in the depths of it, if you work at seeing it.

    Thank you for blogging about your experience. The more we Duchenne families tell our stories, the better. Here’s sending you lots of encouragement!
    Best wishes. IvyReplyCancel

    • Sharyn Thompson - Ivy, it sounds like I may have to go in search of that book. LOL!

      Thank you for your comment, it’s great to see others supporting the need to get the actual truth out there to accompany the copious amounts of (sometimes over-exaggerated) positivity already in existence.ReplyCancel

  • Yaya - I am the grandmother of two precious DMD boys. Dillon is 9 and has been in a wheelchair for two years. He is dependent on my daughter for EVERYTHING. His little brother, Tyler is almost 7 and he also has DMD. Their psychologist finds ways for them to express how much they hate the disease but we deal with anger and sorrow on a daily basis. My heart breaks knowing we won’t have them long. And like so many parents and grandparents do…we just keep moving forward being as strong and positive as possible. My daughter is amazing…just amazing!ReplyCancel

    • Sharyn Thompson - Yaya, both you and your daughter son amazing, and I’m sure her boys are equally amazing. I hate duchenne and what it is doing to our son and family, but I am thankful that James ended up with us and not some family that would never put his needs first. there are so many amazing kids and families out there, I know we’re in good company.ReplyCancel

  • Donna Schneider - Yes I am on Facebook…I will friend you and send you the letter 🙂 I would love to chat also…I live in the U.S., in New Jersey.
    You are right, people don’t get it, nor would we if not in this situation, but if people would just stop for a minute and absorb the devastating affects of DMD, maybe they could be more supportive and understanding.ReplyCancel

  • Gentrie - I met someone with DMD for the first time last month. Thank you for this post.ReplyCancel

  • debbie jewell - My 8 yr old grandson has DMD, also a mutation, no family history. My daughter, her son and daughter live with us. Thank you for putting it all out there! You have described our life living with DMD exactly as it is, no sugar coating. I never knew this disease even existed till my grandson was diagnosed at age 6. We have worked hard to increase awareness but people who don’t deal with this can’t even begin to imagine the heartache. Thank you for keeping it real. GOD placed this beautiful child in my life and I am humbled and grateful to help my daughter through this journey and make his life as fulfilled and happy as humanly possible. I love him.ReplyCancel

  • Jessie - Thank you for this post. I know its older but it resonates. I was asked recently where I saw myself in 5 years. My response of “I don’t think about the future” confused the other person. I had to explain that as the parent of a child with a degenerative muscular disorder I can’t think about the future. He then went on to say he meant would I remarry, would I still be in the same place, same job? I had to be explain that those aren’t stand alone decisions. If I remarry, will he be able too handle my son’s illness? I will have to move soon because my doorways are too small for a power chair, but how will I afford a larger house on my own when I don’t qualify for assistance? If I change jobs, will they be OK with all the days off I need for my son’s doctor appointments – that are 3 hours away? This all weighs on me every day but I refuse to dwell on what will be and choose to focus on the now – where my son is sweet and beautiful and still healthy. I don’t have the luxury of day dreaming about the future. And that pisses me off!ReplyCancel

  • Wayne - My name is Wayne my son devin has dmd and we call MDA ! We had high hope untill he was 6 and we relly needed thair help ! Then we found out what a million doller organization relly does for u I asked if that had a grant writer to help aply for home modifiecations , thay sed no ! I asked for a lift for his power chair thay sed thay don’t do that either ! I asked if thay Had a medical bed ? No! So I then asked what do u do ? Thay sed we have a one week summer camp . We will also repair a piece of medical equipment up to 500 $ ok what if I find a used one under a 100$ will u help me ? No not for a purchased ! I think jerry would be upset to know his Legacy was left to a bunch of CEOs looking for thair cut $$$ReplyCancel

  • jennine - We lost our son last July. Jason made it to 20 years old. We knew that his body was failing him but we still had hope that he could make it another 10 years. So many new studies were talking about an increase in the average life expectancy of boys with Duchenne. I don’t know what is harder, expecting a sudden loss or trying to be positive in order to live every day with hope. My husband and I grieve every moment of every day without our precious child. Thank you for your post. We feel that Jason was our gift in life. Living with and watching his struggle was so hard but we had a love that we will cherish forever. We know what matters in life. Our son is our inspiration.ReplyCancel

  • Michele - Sharyn – you are anything but negative. Some of us cannot put our feelings and daily lives into words like you do. I hear so much of our life in your blogs. You are truly a good person and it is not fair that we have to deal with this monster called DMD. I think about you and your family often and wish we lived closer to each other. Keep on writing and being honest! Love your writings!! Michele <3ReplyCancel

  • Tonya - Why focus on the negative???? Because there are no positives!!! Thank you for sharing.ReplyCancel

  • Donna - Heartbreaking. Hard to read, can only imagine how hard to write and live through. Bring on a cure x xReplyCancel

  • Britta Walker - Hard to read but its a must for anyone that doesnt really know or understand this cruel disease, thank you for sharing, I am a grandparent whose grandson has DMD and every day my heart breaks and even more sadly is that for some a cure wont come quick enough.ReplyCancel

  • Jessi - I do not personally know anybody with DMD, but i decided to do a report on it for the essay fro may science class. (We are currently working on genetics), but this blog has really opened the gates for me. I really want to help people with DMD.
    As a 7th grader, would this be hard?ReplyCancel

  • Gretchen Letteney - What a heartbreaking but such a real blog posting. My son, also named James, died from this lousy disease 6 years ago. I pray every day for a cure to be found soon so that no other child or young adult gets stricken with this horrible DMD and so no other parent, sibling, grandparent, family member, or friend loses a precious loved one to this.
    Thank you for this moving and factual blog message.ReplyCancel

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