Wednesday, December 26, 2012

The Season of Giving..

I hope everyone had a very Merry Christmas and a Happy Holiday! The new year is just around the corner and more of our family celebrations have yet to be celebrated. I have been a little MIA from the blog to the point where this is the first time I have logged in, in over a week. As you could probably tell from my last post, Heartbroken, it was a pretty gloomy week here before Christmas.

That whole situation has made me appreciate life even more and has made me feel so incredibly fortunate for everyone and everything in my life. The whole "26 Acts of Kindness" is a wonderful avenue to pursue which I am partaking in. In light of the holiday season, I ask you to consider making a donation to a charity, help out another who is in need or volunteer somewhere. And to make sure your loved ones know how grateful you are to have them in your life. I am so grateful to all of my family members, friends and strangers who have been so kind to Evan and to all who have supported the FIRST Foundation.

Even though my life feels complete, a cure for my baby is all that could entirely complete my life. Possessions and luxuries could never truly make me happy or feel 'completed'. Every shooting star, lucky penny, or wish I make, is for a cure to be found someday for my lil man. A cure from the comfort issues with scales & dryness, dehydration, crazy metabolism, and infection risks. I would never want to change the way my baby looks but if  I could take away all the complications and life threatening challenges I would in a second. Maybe someday it will be found. Fortunately Evan is a happy little man so we will do just fine until then. (I keep telling my sister to go into Ichthyosis research since she is a Scientist and is pretty much a genius with genetics and pharmaceutical research.)

No matter the 'Act of Kindness' you choose, it will make your soul feel better. The FIRST Foundation is a wonderful non-profit organization that connects families who are affected by Ichthyosis and educates those who are not familiar with the disorder. They host conferences both national and regional to connect families and share the newest information regarding research and treatments. This foundation also helps fund research for a cure. They have been nothing but a wonderful conection for our family.

A few other charities you may be interested in helping:

Autism Speaks-
    In memory of Rachel D' Avino, a Behavior Analyst who lost her life in the Sandy Hook tragedy.

Trisomy 18-
    In honor of two miracles I personally know who are affected by Trisomy 18

    In memory of a little boy named Tripp Roth and in honor of a baby boy named Easton Friedel who is currently fighting Epidermolysis Bullosa to stay alive.

Thank you!! Enjoy your New Year celebrations!!!


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