My little handsome boy would have been turning 4 and I sit here today, wondering what life would be like to have Ethan here enjoying our company. Would he be running around playing with big sister or would he be making a mess with all his toys. When I think back when he was here, I can clearly remember those sweet little moments when he would smile and coo at me. It would just melt me every time. But there are also those hard times we went through as a family: Ethan in pain, sleepless nights, Lily having to spend nights away from home, but most of all moments wondering just how long would he stay with us. When the doctor told us through her tears that babies with this disease don’t usually make it to their first birthday I was a devastating blow to my core. I felt my body weak and like my world came crushing down. Ethan had already survived and recovered from an upper respiratory failure. How was I suppose to cope with the fact my baby could be gone from one moment to the next. I just remember being grateful for EVERY SECOND I got to be with him. For EVERY SECOND he was breathing. I held him in my arms and fought my own sleep every night like as solider watching his post, singing to him and watching him breath until exhaustion would overtake me, because for that night I had him and no one knew if I would get another chance. This is what a parent of a baby with terminal illness has to go through. Epidermolysis Bullosa (EB) is a inherited skin disorder that causes blisters after even the mildest pressure applied to the skin. It can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth. Depending on the type of EB, (Ethan had Junctional) the effects of the disease can be mild, disabling, and/or life threatening. Please help us continue spread awareness of this horrific skin disorder that took our son’s life at just 4 months. There are many other babies, children and adults who are suffering from EB right now. You can also DONATE to EB research. Join us in strengthening the hope for a longer life with less suffering for these families.
2 thoughts on “Spreading Awareness for Epidermolysis Bullosa”
Thank you for sharing your beautiful son with us and for educating us about his condition.
I really admire you Norma to be brave and share all this with us because as a mom of 3 I feel that I can’t handle all this without crying seeing a baby in all this pain but thanks for sharing your history very admirable for you as parents God bless you today and always