26/06/2014 10:22 BST | Updated 25/08/2014 06:59 BST

I Run in My Dreams

I watch with envy those running - and literally picture myself in their shoes. Closing my eyes tightly I try and recapture the essence and joy of running - a simple pleasure that most take for granted. I don't remember the last time I ran, but be rest assured it has been many years since I felt the exhilarating feeling; wind in my face, hair flowing behind, the continuous even beat of feet as they pound the ground, a heart pumping steadily as blood courses through veins heightening all senses, feeling strong and alive. Through necessity I've come to terms with the fact I'll never run again, but no one can stop me from dreaming.

I was privileged to meet by chance through the Internet an amazing young woman, who like myself was born with Gaucher disease. Over time and much e-mailing back and forth we've found we have far more in common than just a rare disease and hence a friendship has been formed. Emma Rooney, who is twenty years younger than myself, loves to run, and she recently ran a night ultra-marathon to help raise awareness of Gaucher disease.

To complete the 100 km run it took Emma a gruelling 17 hours, 32 minutes and 03 seconds to reach the finish line. I sent her dried pink rose petals from my garden which she carried in her pocket, along with a list of everyone around the world who had followed and supported Emma's incredible run. With great determination, dedication and hard training she was in the best possible shape for such a challenge. Taking turns to accompany her along the run were family, friends and her husband cycled beside her on the final stretch giving her support and encouragement as her body struggled to complete her goal.

Emma ran for herself and for "Gaucher disease" but also in my name. I was honoured and very touched when Emma told me she was running on my behalf too, and thank her for symbolically taking me along. I may not be able to run, but I was there in spirit.

Despite limitations due to ill health, if you put your mind to it, you can still achieve great things and overcome obstacles you thought were impossible. Living with Gaucher and Parkinson's is far from easy and challenges are daily thrown at me. Over the last few years I have been on quite a journey, although it involves no running, but a huge plan is unfolding before my very eyes, my life has a purpose, as doors keep opening and new chapters appear just waiting for me to reach out and grasp them. Endless optimism and hope are what keep me going, for you never know what tomorrow will bring. As another day comes to an end and my head touches the pillow, I shall visualise swirling around the dance floor in the arms of my husband, or perhaps tonight in my dreams I will simply run as fast as the wind.


(Photograph courtesy of Nathan Killoran.)