Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

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Stand Up for 22q - Hayden's journey

Taking on The Monster to raise more awareness of Hayden's condition and to give a little back...

Image: 19792816_1492716311.0117_medium.jpegHello all you lovely people.

On 15 August 2017 I will be taking on the 60 mile (100km) Great Glen Monster Challenge on a stand up paddle board. The route covers the width of Scotland, and runs from Fort William on the west coast, to Inverness on the east coast. The paddle will take me across the the Caledonian Canal, Loch Lochy, Loch Oich and the mighty Loch Ness.

I aim to do this distance in 2 days (it would usually take 3 to 5 days on a canoe) with a paddling time of about 10 hours per day - depending on which way the wind is blowing! Oh, and I'll be doing it on my own.

My goal for this challenge is to create awareness for a genetic condition called 22q11 deletion syndrome which my son Hayden was diagnosed with when he was just a few months old. I would also love to be able to raise some money for a number of charities like Max Appeal ‌ that support families living with with 22q11 deletion syndrome.

Full details and to donate:
https://www.gofundme.com/3o8serk Right Arrow
Darren would like to include some names of children affected by 22q11 DS on the t shirt which he is going to wear.

If you would like your childs' first name on Darrens shirt, please email us at info@maxappeal.org.uk so we can pass the details to Darren