Sam will be Six in a couple of weeks. He will be starting public school for the first time - Kindergarten. He will be an older kindergartener since he missed the Sept. deadline last yr. That is ok because I think we needed an extra yr to prepare to send him out. He is very excited and loves to meet new people. 

Sam at park. He is almost six!

Sammy

Sammy will be five this Sept. I remember telling people that I expected they would find a cure by the time he was five. Well, we are not quite there. This makes me real sad but I am thankful that Sammy has a strong spirit and is thriving in spite of this horrible disease. I hope and pray someday that Sam and all the other EB children could experience life without pain. I know God loves Sammy and I will leave him in God's hands to comfort him and give him the strength he needs to get through each day.

Video from EB Medical Research Foundation

About Sammy

Sammy is 4yrs old and a typical boy in many ways:
He loves to run and play rough ( but knows better most of the time).
He loves Soccer, baseball, football, cars & trains.
Dancing comes naturally and he will dance as long as his feet will let him and then some.

Sammy's fragile little body works hard everyday to keep up with the tough spirit within him.
I have never met a person as tough as Sammy!

What is EB ?

Epidermolysis Bullosa is a painful, life threatening disease of the skin. Sammy has the form called Recessive Dystrophic. In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen. Further genetic testing will determine whether he has the protein or it is deformed.
Because of this genetic defect ANY friction however slight can cause several layers of skin to rip away creating horrific, painful wounds. Daily activity also creates giant blood blisters as the skin detaches from the rest of his body. These blisters will continue to grow as they pull on the skin unless they are popped with a sharp needle.