I’ve just been reading about different blogger charity events, and it’s made me think back to a trip I took five years ago that changed my life forever.
As a magazine features journalist I’ve had the privilege of meeting some remarkable men, women and children.
In 2005 I was given permission from the Progeria Research Foundation to attend an international conference for children born with Progeria.
If you don’t recognise the medical name Progeria is the genetic disease that ages children too quickly, causing their bodies to age up to 10 times faster than normal. So, a child who is just eight years old can have the physical body of a 80-year-old – complete with crippling arthritis, wrinkles, grey hair, and heart disease. Rarely do these kids survive past their early teens.
It’s a bizarre and baffling disease and, to be completely honest, I felt really nervous about meeting the kids beforehand; I worried that I’d find their physical appearance too confronting, their illness too heartbreaking. But within moments of entering the room, I’d stopped noticing how they looked on the outside – all I could see was the amazing spirit and energy that radiated from each of them.
These kids were all terminally ill – most would be lucky to survive two or three more years – yet they were so full of life and happiness and laughter.
It was like Progeria had cruelly taken their health and longevity but had given them something extra instead – a special spark in their spirits that allowed them to squeeze every last drop of joy from their short lives.
I know it sounds corny, but I felt genuinely honoured to spend time with these children, and their families. The grace and dignity with which they all coped with this cruel disease humbled me. It brought tears to my eyes to think about how little life the kids had left, yet they all exuded gratitude and enjoyment, as these families treasured every minute of every day they had together.
I realised how easy it was to take life for granted, and overlook the small pleasures in life, and vowed to appreciate everything so much more once I got home.
And I did… I still do.
Of course, there are times when the toddler is playing up, the baby is screaming, and I look forward to the day being over. But then I think of those parents and how each hour brings them closer to the day they’ll have to say goodbye to their children, and I realise how insane it is to wish even one second of my life away.
Sadly, many of the wonderful kids I met at the Progeria Reunion have now passed away, but the impression they left and the lessons I learned from them will remain with me forever.
Find out more about this disease on the Progeria Research Foundation website.
I think it’s very true that when kids are given a challenge of some sort in one aspect of their lives, they are also given a special light that shines inside them in another way.
Lucky you that got to see some of those bright lights.
I think children are very speical and wow, what amazing children. It is said that the shorter a light burns the brigter it shines
You’ve made me cry, deary. Hm.
That’s a terribly moving post. Thankyou for raising the awareness about the condition. I did watch a documentary on it once and I found it heartbreaking. They did act exactly as you say, full of life and happiness.
Big hugs, Becca x
Cate P, The Mad House, Beckickles:
Thanks for your comments – you’re so right what you all say about these kids just being so full of life and vigour. It’s ironic too, as normally in life the adults are teaching the children, but in this case the children were teaching the adults. I’ll never forget the experience, or the kids xxx
Thanks for writing about this. I have met one child with Progeria, and he was a dynamo. He explored everything, tried every food going past, and lived with an enthusiasm and joy I can never hope to match.