I created Garrett's House in 2004 after the death of my son Garrett James. He was born with a genetic skin condition called Epidermolysis Bullosa, or EB for short. He died from complications of EB when he was just 12 days old.
The name, Garrett's House came about, after the 1st Anniversary of Garrett's birth and death. Each year our family celebrates his birthday by decorating a Gingerbread House. After the first year, a friend suggested instead of calling them gingerbread houses, they should call them Garrett Houses. And there came about the name Garrett's House.
This site is in memory of him and all the other EB Angels out there. It is also to provide information, resources and tips to the parents of EB babies. It was very difficult when my kids were first born and had EB. I want to make another parent’s experience a little easier by sharing all the things I have learned along the way.
In addition to Garrett, I have 3 other children: Samantha, Summer and Grace. Samantha has EB, and Summer and Grace are EB Free.
Samantha and Garrett inherited EB from me. Below is my story of what life was and is like with EB.
My story
I was born in August of 1977 in Kalamazoo, Michigan. My EB was obvious at birth. I spent a few weeks at a local hospital in Kalamazoo and then was transferred to Henry Ford Hospital in Detroit. I remained there until October then I was sent home basically to die. Well obviously that didn’t happen!
My parents never wrapped my wounds. Everyone said air-drying was the best. So I sat naked into of a diaper till I was about two years old. I began walking after I turned too and haven’t stopped since! I don’t really remember much about the physical part of having EB. I remember getting blisters a lot, but I don’t recall the pain too much. I have been told my skin improved greatly as I got older. I was always really skinny as a child and remember getting teased a lot from having scrapes, scabs and blisters on my arms and legs.
I went to a regular school when I was 6. I had a few close friends, but that was about it. In elementary school I played softball in the summer. When I got to middle school, I joined the tennis team and was in the marching band. I still got blisters on my feet, but that didn’t stop me! I continue to play tennis and marched in the band when I got to high school. By then my EB was pretty much non-visible to the average person and unless I told people. And even then everyone always said they never new I had EB. I got a part time job when I was 15 and still managed to graduate with honors from high school in 1996.
I went onto college where I received a Bachelors of Science degree in Legal Studies. I was planning on going to law school, but things happened!
I got married, moved to Florida, bought a house and had kids!
When it comes to EB, I know compared to most, I have it easy. I do know many others are in much more pain that I ever was or will be. But, EB is still EB no matter what form you have. It may affect us in different way, but we all understand what each other is going through and that is all that matters....
Just to warn you, some are quite graphic
Home
Sara’s Story
Samantha’s Page
Garrett’s Page
Summer’s Place
Samantha’s Story
Family Photos
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