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Jonathan's Smile
By Brenda Gionfriddo

The day was May 11, 1999 I was excited yet scared for what was to come. I was scheduled to go into the Hospital at 7:00 p.m. to be induced. I was two weeks over due and ready. In only five short hours the said " It's a boy". I was overjoyed; I already had a wonderful two and a half-year-old little girl and I hoped for a boy this time. Silence in the room and then whispers in the comer shattered my joy. I screamed out '~what's wrong with my baby". The doctors asked a few stupid questions and then I got to hold him briefly, he was beautiful I barely got to hold him at all when they took him away to the neonatal ICU. A couple hours later they wheeled me down to see him. I didn't see anything wrong with him; all I saw was a gorgeous baby boy which we named Jonathan. With still no information for my husband or me they brought me back to my room. A doctor came in shortly after that and explained that they believe what Jonathan had is a rare genetic skin disorder called Epidermolysis Bullosa (E.B. for short). The only thing to enter my mind at that moment was fear. Fear of losing him before I ever got a chance to know him. No one really answered any of our questions; instead they ask us if it would be okay to transfer him to another hospital that had more knowledge of this disorder. We agreed and I packed up my stuff hopped in my car and was admitted into the same hospital that he was so I could be with him.  After getting settled there a neonatal doctor entered my room with some answers for us. She said in a very blunt and to the point way" your son will have a really hard life, filled with pain and hardship due to this. He could blister by the slightest touch or trauma to his skin". I thought to myself "Would I ever get to hold or touch my son, and if I can will I hurt him?". I was then left alone while family went home. I must have cried for hours sitting by the incubator. I was not able to touch or hold him and tell him it would be all right. This all happened only 12 hours after his birth. I was tired and hurting, but was unable to rest. A specialist entered my room as I tried to relax a little: he told me that he would need to take a biopsy to confirm their suspicions. I then asked, can I ever hold him?". To my relief he said, "Of course you can as soon as I finish". I picked him up, looked straight into his eyes and he smiled. At that point my fear turned to joy and I knew no matter what we had to go through in his life we would be all right. A baby's smile can do wonders, but when Jonathan smiles even at times when he is in pain it gives my the strength and courage to face another day.

Living with
Epidermolysis Bullosa
by Silvia C. & Brenda G.

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