Samantha Sheridan was born 2/13/95
in Tampa Florida. Diagnosed at birth with Epidermolysis Bullosa Recessive Dystrophic
Hallopeau Siemens otherwise known as RDEB-HS. For me it was instant devastation.
The baby that I had always wanted, and dreamed of, and then patiently waited for so many months being pregnant, was at birth in critical condition. It was a fear that I do not ever wish to feel again. A fear of not knowing what was going to happen. When we first heard the words “Epidermolysis
Bullosa” we were in shock. My husband set out to learn all he could about this very hard to even pronounce disease. I was not able to read anything. The little bits and pieces I was hearing were so frightening I could barley
All I knew is that I had this incredibly gorgeous 10 1/5 pound, blue eyed. Baby girl, that I just knew I could not live without.
At first the doctors thought she had the subtype that is fatal before the age
of 1. We even went for a second opinion at our local University, and as if it were yesterday, I remember the doctor telling us that it was just a matter of days before she would pass. The one common line I continued to hear was that this disease was not very well known, and the future was not clear. From the very beginning the sight of these big blisters forming all over her tiny body was heart wrenching for me as a mother. Then when our
dermatologist brought my husband and I into her office to show us how we had to lance these blisters and then bandage them was more then I could bare. As a matter of fact, I could not even do it the first few times. My husband had to do it. I was totally freaked out. I lost my breast milk because I could not eat, and since the doctors told me she would probably die in her sleep, I would stay awake all night long, because I was not going to let my baby die while I was sleeping. Eventually I took over all of her wound care determined to make her better.
After the shock became every day life for me, I then began to investigate all that I could about EB. I wanted to learn all that I could so I could give my child the best possible chance (at what seemed to be impossible) of a normal life.
In this journey I discovered the many needs EB imposes on families afflicted by this all encompassing disease. I say all encompassing because EB affects your skin which is the largest organ you have along with all of your senses, eyes, ears, hands, feet, touch, taste, everything.
I knew then that I wanted to be able to do something to help in what ever way I could. I could see that the emotional impact was just as large as the financial impact. The pain I was feeling was a pain that I still feel today, and have much difficulty explaining to someone who has no idea what it is like to watch your child suffer in constant pain. Maybe because I cannot fix my child it is sort of like a therapy for me to help others. Maybe it is because there is a multitude of needs that no one person can possibly do it all. God has prepared me for this journey now. I spent the last 8 years serving on the board of trustees for the National non profit organization DEBRA. After really getting acclimated to EB, the one thing that stood out in my mind more then anything was the need for financial relief for the families afflicted by EB. The cost of bandages alone monthly was any where from
$2,500 to $5,000, and that does not even include medications that insurance does not cover,
NOR the nutritional supplement you need to provide your child daily because they are constantly
suffering from malnutrition from the loss of protein in the blisters they get every
day. It also does not include the costly eye gels products to provide healthy vision due to constant corneal abrasion, nor does it include the cost of special clothes or shoes, because, after all, the slightest touch to the skin will cause it to blister. (The SLIGHTEST TOUCH).
Insurance covers none of these items which undoubtedly will cause the average family to go broke or even cause a family to be “broken” which is actually even worse then being broke. We all know financial stress is one of the most, hard felt pressures in life.
I think this disease is screaming for help. I know when we do dressing changes our neighbors can hear her screams. I hope all of America will hear EBAN’s screams to get some help for the children who suffer from EB, and their families.
Samantha is my inspiration.
Email Marybeth @ firstname.lastname@example.org
"Nicky" Zahorcak is Silvia's
son. He was born on November 25, 1996 with RDEB-HS (Recessive
Dystrophic EB, Hallopeau Siemens subtype). Nicky is quite severe and has to be bandaged
from head to toe due to the severity of his wounds, and he has
many of these wounds that haven't healed in years. Nicky has a
g-tube to supply nutrition to him, had 3 reconstructive hand
surgeries & 8 throat dilatations. He also needs blood and
iron transfusions on occasion to attempt to treat his severe
anemia. Aside all his health problems, Nicky is an amazing
child, who loves school and made the Honor Roll for every
trimester since 3rd grade. He also very much loves his little
For more about Nicky, please
visit his website at:
Email Nicky's mommy Silvia @ email@example.com
Jonathan Gionfriddo is Brenda’s son. He was born with RDEB on May 11, 1999. When he was born the doctors felt he was mild, but as he grew and explored the world his EB got worse. Jonathan is believed to have moderate EB, but his mom sees him worsening every year. There are more and more wounds and even though they heal they will be open in just a few short days. He is being monitored by a plastic surgeon right now due to some webbing and contractures in his hand. He takes iron supplements for his anemia and has a g-tube because it is too painful for him to eat. Jonathan is bandaged from his neck to his feet to help protect him; his skin is very fragile and does tear easily. He was also recently diagnosed with severe eczema, which has caused his EB to get much worse due to constant itching to the point of tearing his skin. Jonathan’s face usually has at least one open wound daily usually more due to itching so much. It seems his eczema is most prevalent on his face, though he does itch everywhere.
Despite Jonathan’s EB and severe eczema he is a very happy little boy who loves school and has demonstrated in school how very smart he is. Most people fall in love with him immediately when meeting him. He also has an older sister Ashley (EB free). He loves her very much and she loves him trying to protect him whenever she can.
Jonathan is loved very much by his family and we have gotten more love from him then we could ever hoped
For more about Jonathan, please
visit his website at:
Email Jonathan's mommy Brenda @