Evie is doing remarkably well. She started a clinical trial medication that should help with her disease, hypophosphatasia, in December of 2009. It is a disease where her bones do not absorb any calcium on their own, but with treatment we have seen new bone growth after three months! She will have another full set of x-rays at 6 months when the initial trial is over. She will then start a 2 year extension study. She continues to be a light in ourlives every day. Even with getting shots three times a week and numerous tests and physical exams, she is one happy kid. I look back at our Now I Lay Me Down to Sleep (NILMDTS) pictures, filled with joy that she was still with us, and my heart is filled with indescribable gratefulness for the 6 months that we have spent with her. It was a difficult pregnancy with her prognosis, but I would do it all again to be where we are now. You can follow us as we journey through uncharted territory with her disease and treatment at http://eviejayne.blogspot.com. We are eternally grateful for the prayers and support we receive for Evie, and her life is living proof that miracles do happen.

To make a donation or to get involved with NILMDTS, please email DECAproject2009@yahoo.com