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Help Find A Cure
Help Find A Cure
Story
Hi there Lovely Peeps,
Many of you will know that I am running my very first and most definitely.. probably..maybe.. last marathon in a mere 3 weeks time. Eeek! The Auckland Marathon takes place on 2nd Nov here in beautiful Auckland, NZ and although it is fair to say I am absolutely cr@pping myself, the hard work has been done and hopefully it will all be worth it on the day. (Hence why I have left the fundraising to now- no broken wrists or other injuries to stop me this year!)
BUT...not only am I going to strike this bugger off my Bucket List, I have another little incentive that will be spurring me on on the day- actually two little, but extremely special incentives:
Meet the gorgeous Jude and Isla Donnell
Jude and Isla live in Sydney and are very special buddies to my niece and nephew, Ben and Bella. Isla (5) a month younger than Bella and Jude (3) is 5 days older than Ben- needless to say this is very close to home! They suffer from Sanfilipo Syndrome. Most of you won't have heard of this bastard of a disease- Sanfilippo Syndrome is a rare progressive, degenerative disease that is fatal and there is currently no effective treatment or cure. Life expectancy for children is just 12-20 years. And by some sick twist of fate for Meg and Al Donnell, BOTH of their beautiful kiddies have been diagnosed with this disease.
The Sanfilippo Children's Foundation (www.sanfilippo.
http://www.youtube.com/watch?
So basically- it comes down to money!! Please please donate WHATEVER you can- my 5hrs on the road (ahem!) is the least I can do to try and make a difference. Meg and Al, Isla and Jude- this is for you guys- stay strong- and for Ben and Bella- let's find a cure for your friends xxx
Thanks so much all- I am so appreciative of ANY support.
Lynne x
Sanfilippo Children's Foundation
Sanfilippo Children’s Foundation is a not for profit organisation dedicated to driving clinical research, enabling access to effective treatments and improving the quality of life for children affected by the fatal childhood disease, Sanfilippo Syndrome.