Where do I begin? A lifelong dream turned into a full-time job. It was a busy couple of weeks with lots of excitement, milestones and doctor’s appointments. I had my first public speaking engagement this week at Harvey Road Primary School. It was exhilarating and so rewarding.
A warm welcome to all my new subscribers joining me on this roller-coaster journey.
Given that it was Rare Disease Day on the 28th, I used the opportunity to team up with Natalie Wilson from EDS Support UK, to raise awareness for EDS by talking to the children at Harvey Road School. Explaining to the kids that EDS is like building a brick wall with no cement or mortar to keep the bricks in place. That goes for our joints and also our organs. My title was “Dare to be Rare”. In our children’s lives today, the peer-pressure, the fear of being different and standing out, or failing, is immense. I shared the story of Ezra the zebra who has EDS, and he desperately wanted to be a racehorse instead of being a zebra. He even painted his stripes in the process to become a racehorse, someone he’s not. His friend told him that “You must always be yourself Ezra, as that’s when you’re you at your best”. We all are different – some wear glasses, some have allergies, some have accents – like me, or illnesses, and we should embrace who we are and standing out is not a bad thing – wear your stripes with pride!
I then told them my story. My journey as a zebra – just like Ezra, I am different, and that even with EDS I have a big goal and dream to trek to Everest Base Camp, to see Everest with my own eyes. They were fascinated by all the photos of Base Camp and the journey to get there via Lukla (Chapter 17). You can do anything you put your mind to – some have big goals and some small, it doesn’t matter. You are capable and built for greatness – it starts with a choice. Some days I want to give up as the pain and discomfort or the constant training gets me under, but I keep my eye on my dream and have faith, and in the process see how many people I can inspire and help on my journey.
After my talk, EDS Support UK shared Zebra at Altitude’s Facebook post and some photos on their social media, and it went off the charts. Like my son said “it is not Dude Perfect ‘off the charts‘ mum, but it is epic” lol. Over 7000 people have been reached through this post and to top it all, my JustGiving page was flooded with donations for EDS Support UK. Thank you to every one of you for your prayers, support, calls, messages and donations during last week! I am super blessed to be in this position to share hope! I want to challenge each one of you today, to look at your life and ask yourself the same question that I asked the children on Thursday: “What makes you stand out from the people around you, the one thing that makes you different from the rest?” Life is too short to be obsessed with things we cannot change – earn your stripes. Lift your head and start loving yourself. Give yourself credit where credit is due. It is a very hard thing to do – I know! I am rare and I dare to be different – how about YOU??
