Posted on May 07 2015
My little Erika Roxann was born on January 9th, 1995. She was sent from heaven and she had to go back to soon. I had always known that I was meant to be a mother..but I had a major car wreck in 1981 and the severity of my injuries left me unable to carry a child. I started the adoption process and after many years we were picked to be parents. After all of our planning and preparing we were ready to bring our little one home. Erika seemed to be a perfect baby in every way. 10 little fingers, 10 little toes. At the time I was a NCAA Division I golf coach. I took "Little E" everywhere. We were fortunate in our area to have a education program called "Parents as Teachers". This program sends a teacher to your house to work with infants in the early developmental stages of life. Our teacher was concerned with some of the skills at 6 months. Off to the doctors..no reason as to why Erika wasn't sitting up, crawling, cooing..after months. First diagnosis, cerebral palsy, next was a form of cancer, then they just admitted they didn't know. Erika went into the hospital September 12th, had all kinds of tests, MRI's, etc. and was finally diagnosed with a form of Leukodystrophy. Our doctors here had never seen a case of this before and so came the "Doctors". They came from everywhere. After the MRI was read it was confirmed that our "Little E" was not going to survive this disease. We took our little girls home on October 18th and she passed away in my arms the morning of November 9, 1995. Krabbes Disease is as close as we could get to the type of leukodystrophy our Erika had. She was only with us for 10 months, 26 days, but in her short little life we made the most of it. Love and miss her everyday but she remains in my heart and will stay there always. If there was a Leukodystrophy cause I would chose that one but since there isn't I will chose "Medical Research". I will build my bracelet, and wear it with pride. Thank you for your site and for the hope, donations and awareness you are creating.