Ed Johnson

Polly's page

Fundraising for Tuberous Sclerosis Association
£4,947
raised of £5,000 target
Donations cannot currently be made to this page
Event: Virgin London Marathon 2016, on 24 April 2017
We provide support for today & a cure for to tomorrow for everyone affected by TS

Story

Thanks for taking the time to visit my JustGiving page. As you may or may not be aware my daugher Polly was born with a rare genetic condition called Tuberous Sclerosis. In a nutshell, this means she has benign tumours in her brain, kidneys and heart (currently). This is a lifelong condition for her and there is no cure so essentially this means all you can do is manage the various issues these tumours cause as best you can. I'm not really religious however seeing as there isn't really anything scientific to pin some hope on as a magic wand for Pol, I tend to go with the plan to fund raise as much as possible in the hope the universe will send her some goodwill back in return. Which is probably nonsense but it makes me feel better. Anyone who spends two minutes with her will see she is a very very special and happy girl who doesn't deserve any of the stuff she has been through over the last five years. She means the absolute world to us so even though I'm not remotely designed for running or exercise in general I'm actually weirdly excited to be doing this as in my head the more pain I suffer the more good karma goes Polly's way. The money raised will all go to the TSA who support families and fund research into treatments that could change of the lives of the one in six thousand children born in the UK with the condition and most importantly my Pol!. Hopefully you'll see it's fully deserving of any money you donate. Thanks for listening!

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About the charity

The TSA provides a 'lifeline' to those affected by Tuberous Sclerosis Complex (TSC) and their families. It offers support and advice, TSC Advisers, specialist TSC clinics and conducts research into this multi-system genetic condition.

Donation summary

Total raised
£4,947.00
+ £1,195.50 Gift Aid
Online donations
£4,947.00
Offline donations
£0.00

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