Faye Purpura Dilgen... as odd as it may seem at first glance, I thought it fitting to respond to you here... in response to a note you left me on MY recent post for my sons birthday. Maybe in some way, through the vehicle of this site, we will be broadcasting something important to the world that we share as mothers and as families living with ...the worst disease you never heard of ... EB. I met you, Faye, over 10 years ago and every single day since that day ... I think about YOU, look at your son, John Hudsons, picture, and pray for a cure for EB. I was blessed beyond reason to have 3 children, Matty Danielle, Angelica Adelaide Cogliano, and Peter Cogliano, born without the horrible disease that I have ... that your son, John Hudson Dilgen, has. It is my children born without it and your child born with it that has continued to fuel my passion to rid our world of EB. But the truth is, Faye, that the abrupt end to the great work our team began and the enormous momentum we had ten years ago also ended my personal involvement with EB. It has been YOU who continued on and got the notice that this disease deserves... 100% YOU. I want you to know, too, that I have always been there beside you always cheering you on ... like a fan club ... a fan like no other. Nothing can compare to the work you have done to end this horrible disease, to bring relief to your boy and to your family and to you and to me and to all those afflicted with EB. I am... always have been... and always will be your biggest fan. Please give only all my best wishes to all the EB families that you know and may know me as well. I have never stopped thinking about them and caring about them... but it is YOU that we are counting on to bring that cure for EB our way. Always, Dolores
Posted on: Fri, 08 Aug 2014 19:14:50 +0000
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