Cindy and Suzie

Name: Cindy Fairbanks

Location: Manchester, CT, USA

Family members with EB: Herself and daughter Suzie.

EB Type: Dominant Dystrophic Epidermolysis Bullosa.

Biography... in her own words:

My name is Cindy Healey Fairbanks. I am 36 years old and I have DDEB. When I was born I was put up for adoption. At 4 months old a lovely couple adopted me. They knew I had EB because I had blisters on my fingers and toes. The adoption agency told them that my maternal grandmother did have one blister on her forehead, but my mother did not have any at all. But with all of this they adopted me anyway.

They took me to many doctors and hospitals and they all told them the same thing that there was nothing that they could do. Back in those days they did not know much about EB. So they did the best that they could. My mom would pad the knees of my pants so when I crawled they could help.

When I started school I had a little pocket book with gauze, Band-Aids and bacitracin in it. At school I took care of most of my, as we use to call them, Boo Boo's. There was one time that I fell out on the playground and everyone went into a panic. Everyone except me. The principal called my mom and told her to come down because it was so bad. She came down and helped wrap it and I went back to class.

As time went on I learned what I could do and what I could not do. One thing that I could do was ride my bike. As long as I did not fall off of it. I guess I forgot that part one time. I was camping with my family and a couple of us were out riding our bikes. I hit a dirt pile and I went down. It was really bad. One of the kids went to get my mom and dad. In the mean time people were trying to make me laugh. I remember on guy came out with a HUGE knife and said "lets just cut the leg off." We all laughed. When my mom and dad got there they helped me back to the camper we cleaned up the wound, wrapped it and I was off again.

In my teen and young adult years I did not have many blisters at all. But the reminder, scars, were always there.

At 20 years old I got married. Had my first baby at 22 and my second at 24. Both babies were EB free. Then came along number 3. We did not even give EB a second thought because the first 2 children were fine but not Suzie. When she was born she was missing 5 layers of skin from her knees down to her toes. She actually rubbed it off when I was pregnant with her. Manchester Memorial Hospital, where she was born, did not know what to do with her. So she was moved to John Dempsey Hospital. There they did a skin biopsy and it came back positive that it was DDEB. They showed me how to wrap her legs and hands. She started to suck on her hands and make blisters. We took her home on the 3rd day. We started her on 600 I.U. of vitamin E daily. She is now up to 1000 I.U. daily.

Suzie is now 9 years old and nothing stops her. She handles her skin disorder very well. The hardest thing is at school. It's not like when I went to school, she can't take care of her Boo Boo's they way I use to. She has to go to the nurse and the nurse has a medical kit, which I made with the correct wrapping materials in it. If it is too bad then they know to call me.

One thing I did do before she started school was make a video on how I expect them to take care of my daughter. Including the proper way of wrapping, skin care, and any emergency numbers. Most of the school nurses have never had to deal with anything like this. I also make sure that all her teachers see this video and the principal.

If there is one thing I could tell you is get everyone involved. If you can get assistance through the state you live in then do it. I got assistance through Birth through three from the State of Connecticut. It was well worth it. I think that if you have a disability it makes you a stronger person. Of course you have your days when you just can't go another step. But then you realize that God has made you this way for a reason and he would not give you anything that you can not handle. If we had not had anymore children after our second on then the EB would have stopped with me. But for some reason we had Suzie. It has definitely been a challenge and I am sure there is more to come.

God Bless to All!

Cindy - DDEB (mom to Suzie DDEB and Matt and Christina EB free) !

sign bookview book

Playing: Don't let the sun go down on me by George Michael
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
Website maintained and graphics by Sleeping Angel Creations & Services