With lots of love and a little patience Adelaide has found her way through 4 1/2 amazing years already! I soak up each moment, try to memorize every detail of her and always hope for another blessed day. I’m truly grateful for the immeasurable joy she brings to our lives. You’ve branded my soul sweet girl and I’ll love you always!
I first met this beautiful, wide eyed girl on April 4th, 2015. Our eyes met, she smiled at me with her whole face and my heart melted. She arrived a month early, but appeared healthy, weighing in at 6lbs 1oz. The doctor took her for a quick chest x-ray to make sure her lungs were clear of fluid, which is common for preemies, and I was to have her back in my arms for a breast feeding in an hour. She never came back to my room. The chest x-ray showed skeletal abnormalities that snowballed into a full analysis. Her information traveled up the Eastern Seaboard as doctors searched for answers. We eventually took her home without a diagnosis, we were told she may have something no one has ever seen before, a wonder of God’s creation. A month later we saw a doctor at Emory who specialized in metabolic disorders and genetic disorders of the skeleton. With our beautiful baby girl in arms we were told she wasn’t expected to make it through her first decade of life; she might never walk, crawl or sit up on her own. My full heart was suddenly so heavy that my chest could no longer hold it. It sank to the bottom of me and through the floor beneath my feet. I thought, this can’t be, not this beautiful baby-look at her, she’s perfect! While I cried a lifetime of tears, fate smiled knowing our baby girl’s a precious gift. Every day since, she has continued to astound me.
I am so excited to be participating in the YGF Annual 5K Charity Run/Walk for a Cure. Money raised from this event will be used to create a worldwide awareness of I-cell disease as well as to actively seek intellectual and monetary contributions to enhance research initiatives that would assist in improving the overall quality of life among children with I-cell disease.
Please help by sponsoring me.