All posts by Claire O'Hanlon

My Bridge… A work in Progress

‘At times, hope can lighten the load, other times it strengthens the bridges’ (Gerard N. Lund)

For months now, I’ve been excited about going to watch some inspiring women giving the ‘talk of their lives’ at the TEDx Stormont Women event. The theme this year is building bridges and it’s got me thinking about my journey as a Duchenne mum and the bridge that I am building, the one that is taking me from the moment of my son’s diagnosis with Duchenne to the other side…The side I don’t want to go to, the side that will see me having to say a heart wrenching goodbye to my first born son much too soon, and where I will be forced to walk away from the bridge to a world that I don’t want to live in, a world without my baby boy.

I must admit, my first reaction was to burn the bridge. To pretend that, somehow, I wouldn’t have to cross the bridge if it didn’t exist. And so that’s what I did. But time moves on and I came to realise that I am moving from A to B whether I want to or not, I can’t stop it from happening, I can’t find another way to get from A to B, the only way is to cross a bridge and so I had to choose which kind of bridge I would build.

I could wallow in self-pity. I could live in denial. I could cut myself off from the world. And I could allow myself to stay permanently in the grief of diagnosis, allowing fear of the future to build a wall around me and everyone close to me. But what kind of life would that mean for my children? How would I be able to give them the life that they deserve if I was so focused on my own pain that I chose the most dilapidated bridge to cross? And when I reached the end of that bridge, how could the hardships endured crossing it ever prepare me for life at the other side of the bridge?

And so, instead I chose to build a bridge of hope… and with the exception of deciding to have children, it was the best decision I ever made.

The bridge that I am building is a work in progress and to date it is beautiful. This bridge reflects just the right amount of light to let me see hope on the horizon. Hope that one day perhaps the bridge might take a turn and the destination could be different. But for now, it is headed to where every bridge before it has headed and its direction reminds me to be realistic, and being realistic allows me to plan better for the future with Luke – a child with a severely progressive muscle wasting condition.

My bridge doesn’t look like what you would expect a bridge to look like. Those who knew me before my Duchenne Mum life, will remember a girl too shy to say boo to a ghost. But now that shy girl has shared her story in talks to hundreds if not thousands of people. I would never have expected that I would be able to say that about myself. And so, I am proud that my bridge looks different than what some might have expected.

My bridge is long and wide. Long and wide enough to hold the many people who help me on this journey. My family and our friends. Friends old and new have walked beside me on this bridge and I have laughed and cried with them. I’ve laughed sharing stories of the joy my children bring to me like when they embarrass me by asking very loudly why my TV repair man is wearing a t-shirt that ‘is too tight for his belly’. And I’ve cried telling them that I don’t want to lose my baby to this condition that took my brother when he was only 16 years old.

There are other people who live on my bridge. They walk this journey too. These people bring me comfort and have become my friends. If I had not had to build this bridge I never would have known such amazing people. I’ve watched as some of these friends have reached the other side of the bridge and I am humbled by their strength as they stay there holding the bridge up for the rest of us. They give me hope that I too may one day have the strength to face what lies at the other side of the bridge – the inevitable fate that Duchenne lays on everyone.

This bridge of hope I’m building has the most intriguing watch towers. These towers let me see the progress being made in the search for medicine that will make my bridge travel much further than expected. These towers give me so much hope that they inspire me to join the fight for treatments, a fight for which me and my supporters have raised £100,000.

But the best thing about my bridge is the joy it gives my children. My crazy 6 and 4-year olds who drive me up the wall. The fact that I must build this bridge means that I have learned the value of each and every moment. I treasure every smile, I memorise every climb and every run and every pedal and every jump. These things for Luke will not last long but my goodness the memories we are making will. He’s already seen the real Santa in Lap Land and the real Mickey Mouse in Disneyland. He’s drank the milk right from a coconut and rolled in mud and felt the freezing cold sea on his feet. He and his brother are the happiest little rascals I know and as I travel on this journey it is my mission to make sure they remain that way – yes, the happy part and the rascal part!

And so, my bridge still has far to go. It is and will continue to be covered in pot holes and lumps and bumps, remnants of the joys and fears and ups and downs that every life will have. I know that tough and really tough milestones lie ahead but this bridge that I am building has everything I need to keep on going until fate decides it’s time to stop. But until then we’ll live in hope.

Thank you for helping me build my bridge of hope xx

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Will it Ever be Enough?

Admittedly it’s not like me to post a blog that doesn’t resonate with all the hope and positive beliefs that I try so hard to cling on to. But I am human and being positive all the time is hard blooming work and sometimes you just hit a brick wall. And lately I just can’t help thinking that no matter what I do, it will never be enough!

My baby is getting worse! Every single day his muscles irreversibly waste and every single day is a day closer to that inevitable end that I try so hard not to think about. That end that I have spent the last 5 years of my life trying to fight but right now, my fight seems to have gone off and hidden somewhere and I can’t help feeling that no matter what I do it will never be enough.

I need to work, I simply don’t have the financial capacity to dedicate my time fully to saving my son, believe me, if I could I would! But I try. My days and nights are spent reading, writing, researching, thinking, never letting the ultimate goal stray too far from my mind. In turn precious time with my kids is sacrificed but to what end? What good am I really doing? My son still has Duchenne, I’m still going to lose him and Coen is still going to lose his brother and all the while my kids are living with a mother who is so stressed out she barely remembers her name some days. All this and it still isn’t enough.

I try and try to break barriers for creating awareness of this vile condition that seems like a curse on my family but 9 times out of 10 my pleas fall on deaf ears! I know that there are so many deserving causes out there and the people we need to help us create awareness can’t possibly support them all. But my child will die, that is a fact. Government investment in research is minimal because his condition is rare (not all that rare if you ask me), celebrities want to attach themselves to big name charities with plenty of support because, well let’s face it, that’s where the publicity is, and large regional and national events like marathons still tend to support the larger charities because that’s what’s safe and that’s what people know. Surely it would be more beneficial for them to support rare disease – and I’m not just saying Duchenne – but most rare diseases have extremely limited investment in research (if any) despite the significant number of rare diseases that are terminal. So no matter how many times I go barking up that tree it will never be enough because my voice simply isn’t loud enough!

There are many attempts throughout the UK to improve things like care, access to trials, improving quality of life but because I’m so detached sitting over here in sunny NI I simply don’t get invited and if I do, the financial and home life cost is just too much to be worth the trip for a 3 hour meeting (a 3 hour meeting that means not seeing my kids for about 36 hours – remember one of them is life limited – that’s 33 hours of wasted time). So I try my best to do what I can from here which, let’s be honest isn’t a big pile really, despite the time effort. So again no matter what I do it will never be enough!

I’ve changed my career but that is not enough either. I’ve tried to improve things in NI but that is not enough either. I’ve spent countless hours doing everything and anything that will help but again it’s never enough.

I am giving my boys memories to look back on though and trying my best to make them happy and I hope when they look back they will say it was enough because it’s about the only thing that seems to be right now!

I’ll pick myself back up tomorrow and will be full of positive beans again, but welcome to the world of Duchenne

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Duchenne… What It Really Is!

 

What is Duchenne Muscular Dystrophy? This is a question I have answered hundreds of times. I usually give the generic spiel…it’s a severe, progressive, and life limiting muscle condition. One that will see my active 6 year old become a full time wheel chair user in the next few years, that will leave him all but paralysed by his Mid teens and one that will render him unable to breathe by himself by his mid to late teens and one which will stop his heart from working when his adult life is only beginning. But Duchenne is much more than that. I’m sure when Luke is older he will tell you what Duchenne is to him, but here is what Duchenne is to me:

 

Duchenne is a heart breaker. Not just because of the damage it does to the heart muscle but because when your child is diagnosed with Duchenne your heart shatters into a million pieces. Try as I might I will never find the words to describe the feeling. I literally felt my heart crumble to a million pieces inside my chest. Broken into tiny pieces that will never ever piece together again. But the heart break doesn’t stop at diagnosis. Instead your heart breaks with every fall, with every struggle to get up from the floor, with every waddling run as your son tries to keep up with his sibling, with every time you’re asked ‘mummy why am I tired all the time’? I am just at the beginning of this journey and I know the heart ache that is coming as I brace myself for housing adaptations, wheelchairs, and the more difficult questions that lie ahead. For me, the thought of one day having to bury my son is not just a bad nightmare, it’s a reality that is in my head every single day. How could my heart ever mend?

Duchenne is a game changer, a stealer of dreams. Everyone has dreams for their kids. They dream about what job they’ll do, what sports they’ll play, who they’ll marry, will they travel the world, how many grandchildren will they have? Duchenne changes all that! Luke will never play for the football team, he can’t run fast enough and his legs aren’t strong enough. He’ll never get his Ju Jitsu black belt, the risk of an injury Luke will never recover from is just too high. He may not reach much beyond his 20th birthday so his chances of marrying are slim to none. But I still have dreams for my baby, they are just different now. I dream that he might walk out of primary school when the time comes for him to move to secondary school. I dream that he will have compassionate, caring, and loyal friends who will help make sure he rarely feels lonely. I dream that I will be able to buy him a drink to celebrate his 18th birthday and then I dare to dream that I will celebrate his 25th Birthday with him and, even bolder still, I dream of a 30th birthday party…imagine that!! But my biggest dream…I dream that I can some day hold that little face and tell him ‘we won’, then we can all go back to ‘normal’ or something like it.

 

 

Duchenne is a constant reminder of the fragility of life. Without a miracle I will lose my first born son. That is a fact! So many people are trying to change that fact and for that I am truly grateful. Imagine for a second now that you know that your child will die before you…. How does that make you feel? Perhaps, like me, and so many others you’ve realised that you should have given one more kiss before bed time, that the spill on the living room carpet wasn’t such a big deal after all, that the new outfit you’ve spotted can wait because the smile on your child’s face when you bring home that toy they spotted is just too precious. On days when I need to see the positives, I would almost count myself lucky that Duchenne makes me see the value in every single moment and so that none are lost.

 

 Duchenne makes you realise what is important. It forces you to cut the crap from your life and focus on the good. It makes you question what you do, why you do it and how you do it. Time is precious and there’s none to waste. Time in front of the TV is now time spent outside or in the toy room or painting the walls… oops I meant painting on paper, on the table lol. Nights are no longer spent chilling with a fiction novel or curled up on the sofa, instead its research and planning for fundraisers for the vital funds that might one day lead to that miracle. Things that once seemed important fade into insignificance. I no longer care what people think of me so long as what I’m doing makes a positive difference to the lives of my children. Material things mean nothing to me but seeing Luke pedal a trike, something I thought he’d never do, is priceless. And for me, every decision is made only after asking ‘what difference will it make’?

 

 Duchenne can change your life for the better. Duchenne gave me my fight. It transformed me from a quiet, shy girl to one who will do everything and anything that might mean that one day I can have my miracle. I have to tell my son I tried, that I did everything I could. Duchenne gave me a determined, purposeful, and meaningful life. The years since Luke’s diagnosis have been the fastest paced of my life. They’ve been an emotional rollercoaster but every time Duchenne thinks it has me I look at Luke and fight back.  Because of Duchenne, I have new friends, others whose lives have been touched by Duchenne, amazing people who I feel blessed to know. People in our community who were once strangers have become friends and my bonds with my old friends who have stood by me are stronger than ever. Because of Duchenne, I became a confident, determined woman who is not afraid to speak out to right wrongs and it has given me opportunities to do things that I hope have made a meaningful difference to the lives of others.

 

I hate Duchenne with every fibre of my being but Duchenne has shown me the love that exists in the world. The love that our community has shown to Luke has brought me to tears. The love that my new Duchenne family share is something I could never have imagined. Duchenne in my life means that where possible I only do the things I love, be around the people I love and see love in the smallest of gestures.

 

Duchenne may have the power to pull my whole world down around me, and I know that it may one day break me, but I also know that it has empowered me and there’s nothing stronger than empowered parents.

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£2 Challenge…Making a Dark Day Bright

 

We are fast approaching the 5th anniversary of Luke’s diagnosis with Duchenne Muscular Dystrophy on 25th May. It’s a day I will never forget, the day my heart broke into a million pieces and the day life as I knew it changed forever. It was the day I learned my beautiful little boy, the pure love of my life would have a fate similar to that of my brother who died from Duchenne just a month past his 16th birthday. But it was also a day that I made a promise to try with everything I have to change what having Duchenne means for a whole generation of children.

 

Each year on our Duchenneversary I make plans to add a positive spin to 25th May, so that the date represents positivity instead of heartache, and this year I’ve decided to ask you to help me raise £5,000 for the Duchenne Research Breakthrough Fund by taking part in our £2 challenge. By raising £5,000 you will be helping me fund 140 hours worth of research. You’ll bring me 140 hours closer to saving my baby’s life, to making sure that Coen doesn’t have to suffer the pain of losing his only brother just like I did, and you will be helping the campaign to make this generation of boys the first to survive Duchenne.

 

We are offering to give £2 to 50 people who think they can turn that £2 into £100 for Leap for Luke and you’d be surprised just how easy it could be. Here are just some ideas to help inspire your imagination 😊.

 

1.       Ask a local business to supply a prize, purchase a book of tickets and hold a raffle.

 

2.       Penny Raffle – Use your £2 to buy a book of 500 raffle tickets and envelopes. Put 1 of each ticket numbered from 1 to 500 in an envelope, ask friends, family, colleagues etc to buy an envelope and they pay the number of pennies on the ticket e.g. if theirs is ticket 1 they pay a penny if its number 500 they pay £5 – £5 is the most anyone will have to spend. Ask someone to sponsor a prize and you raise well over £1,000

 

 

3.       Coffee morning at home – Use your £2 to buy a pack of buns, ask friends to come around and to bring some cakes, biscuits etc. Have a get together with friends and family and place a donations box in the centre of the table and ask your friends to make a small donation before they leave

 

 

4.       Car Boot Sale – Have a house clear out and use your £2 towards the entry cost of a car boot sale and donate your earning to your £2 challenge – or better yet organise a car boot sale of your own if you have somewhere to run it and use your £2 towards ink for printing posters.

 

5.       Get the kids involved – As your kids to draw keepsake pictures for family. Use the £2 to have them laminated and ask family to buy them.

 

6.       Sell your coin – Make your coin the new trend to have. Give your coin a special name and ask people to buy it so e.g. you sell it to a friend for £2, the sell it to their friend for £2 and son on until 50 people have bought the coin and you have your £100.

 

 

 

7.       Host a pub quiz – Organise a pub quiz night in your local. Use social media to promote the quiz and use your £2 to print off answer sheets.

 

 

 

8.       Ask a business to donate £100 – If you know a business owner who is looking for a charity to support why not ask them to contribute and use your £2 towards the cost of travel to the business?

 

 

 

9.       Give it Up – Ask colleagues, friends and family to give up something for a day and to donate the money they would have spent – you’ be surprised how quickly the money from those cups of coffee and bars of chocolate add up.

 

 

 

10.   Bag Pack – Ask your local supermarket if you can have a bag packing day, gather a few friends to each send an hour and use your £2 towards travel to the supermarket (big supermarkets usually have these booked months in advance so choose a small supermarket in your home town where it is likely you can get a date quickly and travel costs are minimal).

 

 

 

These are just a few ideas but we’d love to hear some of yours as well.

 

Thank you for considering the £2 challenge, people like you help to change the world by giving families like mine hope. Hope has become a life line for me, it is hope that keeps me going every day and that gives me the strength to fight for my boy’s life. Thank you for giving me that hope.

 

 

 

I look forward to hearing  your ideas to make this Duchenneversary a positive one 😊.

 

 

 

Another Birthday Promise

‘It is the set of the sails not the direction of the wind that determines which way we shall go’. (John Rohn)

This day 6 years ago I became a mum. My beautiful baby boy Luke finally made an appearance and life as I knew it was about to change forever!

When Luke was born I, like most new mum’s, imagined his whole life before him. I had visions of his pre school, saw him walk into Primary school and wondered who his friends would be. I wondered would he be into sports or maybe music or maybe something that hadn’t been invented yet? I wondered which secondary school he would go to and what new friends he’d find there? I imagined what job he might do when he’s older. Will he be academic, maybe he’ll be a teacher, or will he be good with his hands and do a trade? Or maybe he’ll be a scientist and make new discoveries. Who would he marry and how many kids would he have.? It’s funny how when our kids are born we have their whole lives mapped out in seconds when all they want to do is eat and sleep.

But the wind seemed to blow in a different direction and Luke was diagnosed with Duchenne, raising a whole new set of questions!

How will he manage in primary school? Will he be safe out and about? Will he find it hard to make friends when he can’t keep up and will someone stay with him to keep him company while the others run on? What will he do when his friends play sports? What if he likes a musical instrument but this horrible condition takes away his ability to even blow a whistle or hold up a triangle? When he goes to secondary school and his condition worsens will he be left behind? What if we don’t get a miracle and he doesn’t get to finish school before Duchenne wins? If he makes it to adulthood what job will he do and will he find love?

These are only some of the questions that play on the mind of a parent who has just been told their child has Duchenne, but on his birthday, just like I do every year, I promise to set the sails right so no matter the direction of the wind, Luke shall go forward and be great and have the best life that he can imagine, he will have the life that he deserves.

I promise to dedicate my life to help in the fight to change his condition from a terminal one to a chronic manageable one. I promise to use every ounce of energy I have to make his and his brothers’ lives as fulfilled as I possibly can. I promise to instil in him the knowledge and belief that he is great, that he is amazing, that he can achieve anything he wants to in life if he works for it and that no matter the challenges that life may throw at him, he has the strength to overcome them and I will be there with him every step of the way (or at least until he has a girlfriend and doesn’t want me cramping his style lol).

I promise not to let my fear of this condition impact negatively on his life. And I promise that we will try with all we have to change what having Duchenne means for all with Duchenne.

But for today my Lukie, I simply promise you a very happy birthday. I hope you love being 6. 6 is the best age because it’s your age 💙💙💙.image.jpeg

Seems Like Only Yesterday

Dear Mark,

7,670 days!!!! That’s how long it’s been since I last heard your voice, or saw your face, helped you with your homework or brought your dinner into you. 7,670 days but it only seems like yesterday!

Seems like only yesterday since that cold February morning. The morning that Duchenne took over your weary lungs and we had to say goodbye. I don’t know where you are right now, but I’d like to believe that you are running free somewhere. That you’ve felt the wind on your face while riding that motorbike you always wanted. That you’ve experienced the thrill of driving that racing car you always admired. That you’ve delighted in the freedom of running as fast as your legs will take you and that you’ve mastered that electric guitar and strum a little or a lot every day. All the things Duchenne would not let your earthly body do.

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I hope you know I loved you and that I love you still. That I miss you every single day. I miss your smell, and the sound of your voice and the feel of your newly cut hair. I miss your jokes and the key ring collection and the posters on your wall (even if they were a little raunchy towards the end). I miss our Sunday TV nights, your stories from school and your friends hanging around. I could go on and on but mostly I just miss my brother. It’s been so long but it only seems like yesterday.

A lot happens in 7,670 days. We’ve had our ups and downs since then. We’ve had birthdays and weddings and graduations. All in all, 27 new babies were born in our family in those 7,670 days when you include the cousins, I know how much you loved ‘the cousins’. We’ve had new homes and jobs and proud moments. We’ve also lost others we love. We’ve had squabbles, and worries and disappointments. But no matter what happened, there was never a moment when you were not there. We speak of you often, dear knows I speak to you often. And even when I think of all that has happened, it still seems like only yesterday since we had you here with us.

It seems like only yesterday since you used to tell us what you would do if they would find a cure. That was quite an impossibility then but now the future looks a little brighter. I don’t really believe that cure is coming soon or even in my life time. But Mark there is a chance. A chance to change Duchenne. A chance that boys like you can walk a little longer, play a little longer, dance a little longer, hold their hands up in the air a little longer. A chance that our wee Luke might live a little longer.

Today is Rare Disease Day and the theme is ‘With Research Possibilities Are Limitless’. I hope that you are smiling somewhere at the thought of what could be. I know that you would adore Luke because he is just like you – a loveable rogue at 5 years old. I’m trying my best to play my part in making your dream of a cure come true and I hope that you are proud. But I think what we will manage may just fall short, but with any luck, what we do find will mean that I don’t have to write to Luke and tell him ‘it’s seems like only yesterday’.

With all the love in the world Mark

Until we meet again!

 

Business As Usual

This week I bumped into an old friend and a follower of Leap for Luke. She said she couldn’t imagine how difficult it must be to have a child with Duchenne and asked me where I found the time to do all I do. She’s not the first to say these things and I never really know what to say. So tonight I’ve had a think about it and here is what I’ve discovered.

It’s business as usual really.

Just like yours, my bills need paid and so I go to work.

Just like yours, my fridge needs filled and so I do the grocery shop.

Just like yours, my kids want to play and so I get in on the action too.

Just like you, I have school runs and homework and bath times and temper tantrums. I have a house to clean and clothes to iron and errands to run. I trip over toys night and day and I’d swear there’s a secret family living in my house because there’s no way my kids make all this mess themselves.

Just like you, I love my kids more than anything else in this world and just like you, I would fight tooth and nail to protect them, to keep them safe from harm, to keep them fit and well. To keep them in my arms for just a little longer. Just like you I adapt to suit the kids.

But one of my kids is not safe from harm. He has Duchenne Muscular Dystrophy and his life is at risk. So for me that love means averaging 4 hours sleep a night because steroids, the only thing I have that might have any chance of keeping Luke on his feet, have him up and full of beans before the day has broken. For me that love means neurologists and cardiologists and endocrinologists and physios and OTs and Special Needs Statements. For me that love means my heart breaking a little more when I see my Luke struggling with those simple things that are the first signs that his condition is really real, even if he looks perfectly healthy. For me that love means hours of reading, hours of research, hours of campaigning, and hours and hours of fundraising work. For me that love means working every hour that I can, whether in my paid work or in my voluntary roles to make sure that I can say I tried with all that I had to save my baby. For me that love means preempting and planning for difficult conversations that lie ahead with both my boys. Conversations I really wish I didn’t have to think about. For me that love means sometimes thinking towards a future that I don’t want to even contemplate, a future where I can no longer see and touch and hear my Luke. And it’s when I think to this future that the ‘business as usual’ mentality breaks down. Though it only ever breaks down temporarily because for now, while I moan about no sleep, I treasure every night that Luke is able to get out of bed himself, and while I groan about the boys fighting, I’m thankful that they still can. And while I push myself to limits I know I shouldn’t, at least I know I’ve done it with love.

For you, that love means something else. You have struggles that I don’t understand and I would find difficult to manage. For you that love means sleepless nights for reasons I know nothing about. For you that love means fearing for an unknown future that I couldn’t comprehend because I am not in your shoes. For you that love means that you work hard to keep your children safe, and that love means you do everything you can to make your kids’ lives fulfilled. There may be things that throw you off your ‘business as usual mentality’ just like everyone else, but you always climb back on that ‘business as usual’ horse and get back to it.

So you see we are no different.

Just like me, you love your kids more than anything in this world and you will do what you must to protect them, to keep them safe and well.

Just like me, you have bills to pay and so you get them paid.

Just like me, your fridge needs filled and so you do the grocery shop.

Just like mine, your kids want to play so you get down on the floor with them.

Just like me, you have school runs and bath times and temper tantrums. You have a house to clean and clothes to iron and errands to run.

Just like me, most of the time it’s just ‘business as usual’ and that makes us just the same.

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