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.

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!