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. Arriving a month early, 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 within an hour. She never came back to my room. 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. I was just happy to finally have my girl home and was convinced they had never before seen true perfection. A month later she was diagnosed with i-cell or Mucolipidosis type II. With our beautiful baby girl in arms we were told she wasn’t expected to make it through her first decade of life. My full heart was heavy with emotion, but fate smiled knowing the gift I held. With lots of love and a little patience my girl found her way. Every day since, she has continued to astound me. I’m told she’s fragile, but she’s the strongest person I’ve ever known. I’m told her life will be small, but she has a way of making life’s smallest moments big. She smiles in the face of danger and greets life with verve, grace and fortitude. I soak up each moment, try to memorize every detail of her and always hope for another 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 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.