Blog · October 27, 2015

What Does It Mean To Have A Child With RDEB? this is “EB Awareness Week” (#EBawarenessweek) I wanted to write a short blog about what is like to have a child with Recessive Dystrophic Epidermolysis Bullosa.

For me, it means having to inspect every inch of my son’s skin every night. It means taking a sterile needle to lance every new blister and drain them so they don’t get any larger. It means deciding how to bandage each wound, because they all need different ointments and bandages depending on how far along in the healing process they are.

It means having a house full of mass quantities of bandages and creams, all of which will only last a month.

It means having to help my son get from point A to point B in the house as he cannot walk. Because he’s too heavy, I cannot carry him, and even if I did, the pressure from my hands would hurt him.

It means having a son that is not and can never be independent.

It means knowing his condition only gets worse with age and how painful it is to see photos from when he was smaller and better.

It means needing to feed him through the g-tube every single night as he cannot eat normally. He never could. He does not know what pizza or a hamburger tastes like and he never will.

It means that insurance companies can suck us dry, as if having a child in pain every day qualifies us to have all sorts of cash available for never ending co-pays, some of which (for the g-tube, for example) run in the hundreds every month.

It means having to give him pain medication every few hours, as he’s always in pain. ALWAYS.

It means I can only give him gentle hugs and kisses. It means I can’t hold his hand.

It means I have learned to ignore the mean stares and the ignorant comments.

It means I now know what truly unconditional love is.

It means I know how to smile through tears and adversity because I see it in my son every day.

It means I now know what true strength is. Nicky has shown me.

It means I have my personal hero that can laugh when most others would cry.

EB is considered an orphan disorder because so little is known about it. Please help us raise awareness and share this post TODAY!

Love & Light,