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Hello everyone! I just updated Nicky’s CaringBridge Blog with some info on upcoming trials for those interested with links etc. You do have to create an account to access it, but please know it’s free. I do try to keep sensitive information regarding Nicky’s health on that blog only because there are many troublemakers out there and I can block people access to it that have caused me grief in the past. Because of my tireless efforts in raising EB awareness to find a cure for the past 16 years or so, it has made me a target. Thankfully I can block people that say the craziest and rudest things so that’s the reason why I normally moderate or delete posts if they are negative. I simply don’t have time for that. I subscribe to the mantra that if you have nothing nice to say, please don’t say anything atRead More →

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I just updated Nicky’s Caringbridge Blog this morning…. Thank you for your support and thank you for allowing me to vent. http://www.caringbridge.org/visit/nickyz MORE NEWS! The Audiobook of Losing Alex​ will be available shortly. It’s so exciting for me! Also, I was able to lower the cost of my book Butterfly Child – A Mother’s Journey​ to $14.97 if purchased through the publisher. I can’t do nothing about the price charged by Amazon or B&N though, sorry. That is totally out of my control. That’s how much money they are making off my book, eghads! I am working on a “hard cover” version of the book as well, mostly for myself, but I will have it available for anyone that might like that. Love & Light, Post Views: 1,113Read More →

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A quick note!  I just updated Nicky’s blog at CaringBridge… I talk about a lot of different things going on with Nicky right now. Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ Also… I have some great guests coming up for August and September, but since this month is so crazy for me, I decided that on my next radio/podcast show (Butterfly Talk) I will keep it simple and answer some questions regarding my book Butterfly Child – A Mother’s Journey or Jodi’s book “Courage Under Wraps“. So.. if you have any question whatsoever for me or about Nicky or anything I wrote about in the book, such as Losing Alex or my experiences in raising a child with EB, please leave a comment below in the Facebook PlugIn! Thank you so much and many blessings to you!! Love & Light,   Post Views: 891Read More →

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Just a quick note – I just updated Nicky’s blog at CaringBridge… I talk about his recent struggles, results from his biopsy and camp stuff. Here’s the link! http://www.caringbridge.org/visit/nickyz/journal/ On another note, I recently came across this BLOG I wrote for the EB Info World website a couple of years ago and I thought it really belonged here, so I am reposting it. Many blessings to everyone and keep reaching for the stars!               Help! I have a blister!   I couldn’t help but be amused the other day while visiting Target by one of these little packets containing Hydrocolloid Bandages. I was amused by two reasons: 1. Obviously amusing is the fact that I would need to get hundreds just for one week’s worth of bandage changes for Nicky. Ha Ha 2. Weirdly amusing is the fact that every doctor will tell you that unlessRead More →