Please Click HERE and read more about this Disease that is so unknown. I met the founder Tony Heffernan the other night and offered him my help In anyway I can to spread awareness for the charity. Tony lost his daughter Saoirse only 5 weeks ago to the disease. He has a son Liam who Is 2 who sadly has the same condition. This man has given his life and work to find a cure for this and to make what Is such a little unknown Disease known by everyone. So please click on the link read more, watch the videos, see the kids and spread the word. Add the link to your Facebook or Blog is all we are asking that alone makes such a huge donation. Please don't ignore this In passing If it was your child you wouldn't so please act on it It takes no time to copy and paste. Thank you
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