Thursday, May 31, 2012

Ichthyosis Awareness Month: Coming to a Close

Today was the last day of Ichthyosis Awareness Month (though not the last day I will be raising awareness). I have been hearing wonderful success stories from the participants who collected donations for my 'It Makes Cents to Help FIRST' fundraiser. I made my way around town today to gather all of the collection jars I distributed and still have many more jars to collect. I am SO EXCITED to count all of the donations to find out what our grand total is, which I will be sending to the FIRST Foundation. Whether you collected $5 or $50, I am very grateful to everyone who participated and helped raise awareness for this life long disorder.

5 gallon bucket at the Watertown Meat Center

Time to start counting

Evan decided to help

Last night, the Mets supported the FIRST Foundation at a home game against the Phillies. I am extremely bummed that we could not make it. I had planned on going with Evan and my husband but as things turned out, Evan calls the shots around here and it was best for him to stay home. Events can be tricky with my little one, always worrying about where he is going to get changed, fed, or cool down. I have to say thinking about going into NYC for a baseball game made me very nervous. Evan is still so needy, not only with his skin care but with his 'baby care' and stressful feedings. Even though Evan is almost two years old, caring for him is still like having a extremely needy infant that doesn't eat well. And with an Ichthyosis baby, diet and calorie intake are extremely important. Though I would have loved to meet some more FIRST families, I know it would have been a stressful evening worrying about Evan. But to all who went, I hope you had a great time and you will DEFINITELY see us there next year. And maybe, hopefully, Evan will be walking by then....

During Ichthyosis Awareness Month, the FIRST Foundation shared stories written by some of those affected by Ichthyosis. A new story was published on their site each day. I was asked by the FIRST Foundation if I would share Evan's story for Ichthyosis Awareness Month. You can read the story I shared about Evan here. The stories shared are written by the person who is affected or by the parent(s) of the child(children) who are affected. Each story is very touching. You can read their stories here.

This month sure flew by fast. I am very appreciative to everyone who has participated in the fundraiser and helped raise awareness for Ichthyosis. Check back soon to find out the GRAND TOTAL for the 'It Makes Cents to Help FIRST" fundraiser. For those who participated, please click here.


1 comment:

  1. De De,
    I have been receiving the emails from First and the name always pops up first and to my surprise when Evan popped up I just knew it was "Our Young Warrior" Evan! His picture and message brought a smile to my face. He is a sweetie!
    I can't wait to hear your grand total.
    Give Evan a hug from his prayer warriors in Il.
    His Clay,
    Cheryl Bishop