Every few days, I get a newsletter in my inbox from a young lady called Hayley. She’s a 13 year old girl from England who is known internationally as “the world’s oldest teenager” due to the rare aging disease she has called progeria. In simple terms, she ages much faster than ordinary children. Eight times faster.
Although Hayley experiences something every day most of us can only imagine, especially those this side of 60 – arthritis, losing her hair, wrinkles, diminishing health - what I love about Hayley’s newsletters is the lovable, adorable and enthusiastic 13-year-old attitude to life that she has. Hardly a newsletter passes without a photo of her with one of her favourite celebrities – Cheryl Cole, Kylie Minogue, Simon Cowell – I also smile whenever one of her blog posts runs something like this: “Guess what? I’ve been invited up to London to appear on live TV. Can’t say much more at the moment, but watch this space. Clue: I’ll have to get up very early!” her pending sleepless night of excitement is tangible.
Although the doctors told her mother when Hayley was born that she should only expect to live to be 13, the age she turned this year, both Hayley and her mother haven’t given up on the hope that a cure for progeria could still be found. If not for Hayley, for the other sufferers. Hayley is constantly raising awareness of progeria, raising funds, waiting for new research, encouraging others with progeria, and being an inspiration to many more.
The excitement of her busy little life that could draw to an all-too-swift close every day reminds me that no matter what the future may or may not hold, we need to make the most of what we have. If we all only had 13 years to live, would we be as positive and inspiring as Hayley? Would we realise that the celebrities we posed with in photos were probably more honoured to be cuddling up to a living heroine? Would our autobiographies be as rich and inspiring a page turner? Maybe there is something about adversity that seems to make the human race flourish as if it knows it has less time than anyone to make a difference.
Leave your comments – what are you working on today to leave as your legacy?
More: visit Hayley’s website here