Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

April 13, 2010

Sara's Story

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, we 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 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 parents experience a little easier by sharing all the things I have learned along the way.

In addition to Garrett, I have 5 other children: Samantha, Summer, Grace, Jesse and Joey Samantha and Joey have EB, Summer and Grace do not have EB and we lost Jesse due to a uterine rupture in early pregnancy, we never found out if he/she had EB or not. 

Samantha, Garrett and Joey 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. Obviously that did not 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 two and have not stopped since! I do not really remember much about the physical part of having EB. I remember getting blisters a lot, but I do not 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 did not stop me! It was more important to me to participate in those things than it was not to get blisters. 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 most 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 pre-law. I was planning on going to law school, but other 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....

below are some pictures from when I was younger.  Warning, some of them are graphic.

1 day old 

1 year old

age 6

1 comment:

  1. I found your blog through Little Lady leah's. I was surprised to start reading and see you are from Kalamazoo. I live in Kalamazoo with my 4 young children. I started following Tripp's, Jonah's, Bella's and Leah's blog not too long ago and am heartbroken at all you parents have had to endure. But I am also inspired by all the strength you all have in dealing with your little ones. God bless you and your beautiful family :)