Next Sunday 11th October, I’ll be running the Chi Half Marathon to raise awareness and hopefully £2,000 for the CHARGE Family Support Group. Chances are, you’ve probably never heard of CHARGE. Neither had I – until my niece Eva was born last year with this complex and rare genetic condition.
CHARGE syndrome affects 1 in 10,000 births worldwide, and babies born with this often have complex heart problems, breathing issues, hearing and/or vision loss and other factors affecting their senses which impact on their development and communication.
Eva is deaf, visually impaired and has had a tracheostomy, which means she has a tube in her neck to enable her to breathe safely. She also has a permanent feeding tube in her stomach and various other issues.
Due to Eva's condition, my sister Jemma and her husband Steven have to watch her 24/7, which as you can imagine can be extremely exhausting and tough. Despite these issues though, Eva is a very happy baby with an incredibly strong spirit – it’s always amazing to see her progression whenever I go to visit them!
Here's my beautiful niece Eva!
I live about 5 and a half hours away from them, so don't get to see them as often as I'd like - and I wanted to do something to help and show my support. So why not a half marathon, eh?
The last time I actually did any running was about 5 years ago, when I did a 25km run for FareShare. With the Chi Half being a few km short of this, it should be a doddle, right?
Erm, NO. Last time, I had no real training plan, and ended up with a bad sprain on my thigh, a few weeks before a race day. I decided to run anyway - and ended up running out of water, running out of music, going the wrong way, hitting the wall, feeling super weak - all the time making my thigh strain much worse.
So, this time around, wanting to make my niece and her parents proud, I've been more sensible about my training. I've been experimenting and tracking different pre- and post-run foods and drink, doing regular core strength exercises on non-running days, and more importantly, listening to my body to avoid over-doing it.
The course itself is fairly cross-country (the route description keeps mentioning 'steep ascents and descents'..!), which is what I'm most nervous about - but definitely feel mentally stronger and ready for it than last time. And of course, the prospect of a juicy steak at the end will be be most appealing.
The greatest motivator of course, has been knowing that it's all in aid of my niece Eva - and others like her with CHARGE syndrome, plus their families. The CHARGE Family Support Group are a small charity, entirely run by volunteers and they have been a great support to Jemma and Steven, helping them to feel less alone in this challenging situation. I can only begin to imagine how tough it must be for them (and other families in this situation), but they are such a strong family unit when you see them together, which is so inspiring to experience.
And so, I would love your help in raising funds and awareness, so that the CHARGE FSG can continue to be there for people with CHARGE and help bring these families together more.
If you'd like to support my run for Eva, please visit my fundraising page. But if this post helps to raise awareness of this rare condition to at least one more person, that can only be a good thing!
Read more about the CHARGE Family Support Group here.
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