Blog · February 9, 2016

Updates on Nicky

Hello everyone!

bigI 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 at all.

Also, The T-shirt fundraiser for Nicky’s Medical Fund only has 5 days left! After that the shirt (on the right) is gone forever. I may make another one later this year, but this particular design will be a goner.

To take a peek, go here–>

This picture below is from the book “Courage Under Wraps”, available on Jodi’s website This is the photographic documentary that depicts the life of my son. I am not sure if this particular pic was ever posted before.


Sending Love & Light