My six-year-old son, Ivo, has Sotos Syndrome, which is a fairly rare (1 in 14,000 or so) chromosomal abnormality. It's an overgrowth disorder with a impressively wide-ranging cocktail of associated symptoms, including things like difficulties with socialisation, poor motor skills, learning difficulties, respiratory issues, hyper-mobility, facial dysmorphia (aka 'looking a bit weird'), and all sorts of other stuff (Google away!). Ivo doesn't have all of these symptoms – Sotos kids are hugely different – and it's extremely unlikely to limit his life expectancy or anything, but let's just say raising a Sotos child brings a cluster of challenges that can often seem insurmountable.
…which brings me to the Child Growth Foundation.
CGF is the UK's leading charity specialising in rare growth conditions – including but by no means limited to Sotos Syndrome GHD, Weaver Syndrome, Russell-Silver Syndrome and bone dysplasia. To put it bluntly – if your kid's the wrong size, CGF is your guardian angel. They've certainly been ours.
Among many other things, CGF:
- Supports children, adults and families affected by growth-related issues
- Funds essential medical research
- Raises awareness of growth conditions
- Supports health professionals with diagnosis and management
The problem is, these conditions are pretty rare, and they don't grab the headlines like some childhood conditions might, which means awareness is limited and funding is in short supply.
So I'm hoping if I run around a lot this year, you'll help me do something to change that.
Every month in 2019, I'm taking part in a race of some sort. It might be 10k; it might be a marathon; it might be a mad, muddy obstacle dash – I'm not ruling anything out and I'm more than happy to take (plausible) requests. I'm not going to win any of them, but that's not really the point.I just want to end 2019 by ensuring that CGF get a big wodge of cash so they can continue to help families like ours, and ensure that critical research into conditions like Ivo's gets done.
Here's the race line-up:
January 27th – Phoenix Pic 'n' Mix: marathon in 4h08m
February 3rd – Cancer Research London Winter Run: 10k in 0h44m
March 3rd – Cambridge Half Marathon: 1h43m
April 27th – Warrior Adrenaline Race 22.07k in 3h16m(ish)
May 27th – Vitality London 10K: Oh46m22s
June 2nd – Flaming June Half Marathon: 1h47m22s
July 21st – Fairlands Valley Challenge: trail marathon in 5h02m
August 31st – Run Through Hyde Park 10K – 10k in 0h47m38s
September 22nd – Rutland Marathon
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