KicKee Pants' EB Awareness Donation Campaign // Baby Lilah
Lilah was born April 17th 2015 at Howard community hospital in Kokomo Indiana via c section. Upon her delivery a scary observation was made that she was missing all skin on her hands and feet. Not the happy greeting I had expected with meeting my daughter. I saw her for a split second and she was rushed away. A transport team arrived from Riley children's hospital and whisked her away from me. I saw her for all of 2minutes.
I waited just a little under 24 hours and headed to Riley barely off of the anesthetic. It was at Riley when I was told that Lilah had epidermolysis bullosa. A month later our worst fears became reality when she was found to have the recessive dystrophic form.
Since Riley she has been hospitalized and multiple ER visits. A tube had been placed in her stomach due to horrible blistering in her mouth and throat. We are fighting unknown fevers and painful wounds. My five year old son is having a hard time adjusting and cannot understand why his little sister isn't getting better. EB is a forever battle...for all of us. But we will never give up.
She is my fighter and a major inspiration to all those who come to know her!
Click the photo above to see our intro post on EB Awareness Week and to learn more about Epidermolysis Bullosa and The Butterfly Fund.