Reposted from May 2019.

For over a week now I’ve been asking myself how the little shy girl from a council estate in Tyrone happened to find herself shaking hands and having a chat with a Prince in the lavish surroundings of Buckingham Palace.

On 9th May I headed to London with some of my nearest and dearest to collect an MBE from Prince William for Services to People Affected by Duchenne Muscular Dystrophy, an honour for which I am truly humbled as I know many fierce and dedicated Duchenne advocates who are much more deserving of the accolade than me.

As I chatted with other honours recipients, admired the grandeur of Buckingham Palace and discussed my son and my charity work for Leap for Luke and Muscular Dystrophy UK with Prince William, I was reminded of just how far I’ve come over the years and for the first time ever I felt proud of myself. Not because I won an award but because I recognised that I had refocused negative energy from the hardships that life had thrown at me and from strong introversion to create a positive change for me, my family and a wider community. I’ve always considered myself to be decidedly average and those who have known me since my school days will remember a quiet girl with barely the courage to say boo to a goose. But here I am in 2019 doing a job I love helping people to achieve their potential and creating positive change in a community close to my heart in ways I could never have dreamed I could have. From sharing my story, to speaking at countless events, to chairing a group committed to improving care for Duchenne Patients and travelling to Barcelona to spend a week with strangers learning how to become a better advocate for the rare disease community the last few years have been eventful. But I think everyone has the potential to do the things they want to do and here are my 3 tips for making that happen:

  1. Find your motto– 12 years ago I was in a job that I hated. I knew I could do better and my confidence was at it’s lowest. Then I read a book that asked ‘What would you do if you weren’t afraid?’ This became my life’s motto and I still ask myself this every single day. If I wasn’t afraid I’d take the job I wasn’t sure I could do, I’d ask for that sponsorship, I’d stand in front of 300 people and tell them my story, I’d do everything possible to achieve my goals.
  2. Refocus your energy– When the child that made me a mum, the little human I loved more than anything on earth, was diagnosed with Duchenne Muscular Dystrophy, the condition that I watched take my brother’s life, I could have wallowed in self pity but instead I took that energy and put it into making his life the best it could be while also doing everything I could to try to change what having Duchenne will mean for him. The sadness and negative energy I felt at that time gave me the positive energy I have today.
  3. Educate yourself– When Luke was diagnosed I knew little about fundraising, campaigning, neuro-muscular care or rare disease drug development and clinical trials. But I went of my way to learn these things. I spent and still spend countless hours learning and observing so that I am able to use what I’ve learned to achieve the things I want. Nothing in this world stays still so if you want to be good at something you need to constantly grow and develop yourself.

I guess what I want to get across here is that if a shy little girl from a council estate can find herself in front of a Prince in Buckingham Palace for doing anything but staying quiet then anyone can achieve what they set out to do, they just need to create an affirmation that will keep them on track, refocus negative energy and continually learn, develop and grow.


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