Welcome to Eden's web page. Eden was born on November 28, 2001 and was diagnosed with Krabbe Leukodystrophy on March 28, 2002. Eden lost her battle on October 31st, 2002. Every moment we had with her was so precious. Thank you little one for being in our lives. You are in our hearts forever and always. We miss you so much.

To find how she got Krabbe's and the symptoms, read the following:
GLOBOID CELL LEUKODYSTROPHY (a.k.a. Krabbe's Disease)
Globoid Cell Leukodystrophy is a degenerative disease of the white matter of the brain and spinal cord. Segmental degeneration of some peripheral nerves may also occur. It is the result of a genetic deficiency of an enzyme (Galactocerebroside B-Galactosidase) needed to break down certain fats in the spinal cord and brain, passed on by both parents gene's. Early signs can begin as early as 4 weeks with lack of coordination, weakness, colic fits, stiffening of body, reflux and loss of motor skills, tremors may be observed along with arching on the back. As the disease progresses further lack of coordination occurs, blindness and deafness may also occur. Usual onset takes place before 5 to 6 months of age. Average life expectancy is 13 months of age.

Journal

Wednesday, October 31, 2007 8:52 PM CDT

5 years ago, my 11 month old daughter Eden left her sick earthly body to return home to Heaven. Although our time here together was so short, she made an impact on my life that I will take with me until I pass on to see her again. She will forever be my beautiful daughter that left us way to soon, but how very greatful I am to have even had that long with her. She was just a sweet soul who will never ever be forgotten. Sometimes it's so hard to believe that that much time has passed by. It really seems like yesterday that we were all struggling with this horrible illness that we had never heard of. And then again, sometimes it feels like forever since I looked at her beautiful face and watched her breath and smelled her smell, how has 5 years gone by since I held my baby? Where has that time gone? Will I blink my eyes and my son will be 18 and going off to college? Possibly...

In the last 5 years, life has changed quite a bit for us. At some points, I wondered if I would ever be a "mom" again to anyone besides my kitty Shuggy. Through many struggles to conceive and to conceive a healthy child, especially since this was a genetic disorder, at times it became a very discouraging battle. And only through the power of God and persistence can I truly say that my sadness is at ease a bit this year. Last year our son Ronan was born and that was a very emotional time for me, watching his development, making sure that he too didn't have Krabbe disease, even though 2 tests told us he did not. And even to this day, if he does something slightly odd, it pops into my mind as a "what if". But life has certainly become sweeter with him in it and I know that Eden had a hand in that. I know she sent that boy to me to bring some happiness back into our lives, but her memory and her time with us will never be forgotten nor will Ronan ever take her place. Often I wonder what it would be like if my almost 6 year old was here playing with her little brother, but then I wonder if he would be here, maybe one child would have been enough? I don't know, but I do know this. We have been blessed to have great supportive people in our lives over the last few years and I cannot thank my mom enough and some of my closest friends for that.

To my sweet daughter in Heaven today, may you be living a wonderful sweet life and watching over us until one day we are reunited again. Thanks for choosing us to be your parents, you taught us more then you will ever know...

God Bless,
Tiff

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E-mail Author: shuggyshacky@yahoo.com

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