So...I guess I should tell you all about us...I am Liam's Mommy! I am 33 years old and I live with a genetic skin disorder called Epidermolysis Bullosa. Liam, my father and I have been superficially diagnosed with the Dominant Dystrophic type. We get blisters on our precious bodies because we do not efficiently produce collagen. Our skin doesn't adhere to the other layers like yours does. It is painful and it is mentally stressing. Little Liam was passed on our faulty gene. His short life has been a challenge so far, not only because of EB, but he has had a myriad of other health problems as well. Through his experience, he has begun to teach me that regardless of the cards that life has dealt you, if you perservere, all hope is within your grasp. It is never too late to fight and it is never too late to love. I didn't create this to talk about me...I created it to talk and appreciate the life of Liam!
I didn't pray during my pregnancy. I did not look up at the sky once and ramble about the sparing of my tiny baby from the travesty of EB. I knew that, simply, it is what it is. 50% chance that he would carry my defect. 50% of me forgot about it, and 49% was convinced he would be fine. Less than 24 hrs after my little buddy was born, a huge blister formed on his butt. Right above that adorable little hiney was a large, fluid filled blister reminding me that...I am not normal...and neither is my son. I broke the news to my husband and he held me, assuring me that it would be "just fine"...and to his defense, it has been...it is...it will be. But, my friends, this was just the beginning.