After Evie's story was published in Spirit magazine, I got an email from a pediatrician in the pharmaceutical industry talking about Evie's story and asking if I had done any advocacy for her. At the time we were still recooperating from two years of hospital stays and doctors visits and I wasn't really sure where I would even start; then this past spring he asked if I would be willing to speak at the American Acaedemy of Pediatrics conference for his section, Advances in Therapeutics and Technology. Well, YEAH!!! Sign me up!
SO we are headed to New Orleans tomorrow, and Evie's geneticist and I are presenting "The Importance of Clinical Trials from a Parent's Perspective" on Monday!!!!! I couldn't be more excited to share Evie's story with pediatricians, researchers, people in the pharmaceutical industry, the FDA, etc. What an enormous honor for us to be included, and I am prayerful that Evie's story will encourage pediatricians and pharmaceutical companies to work together for the health of other kids. The research that has gone into Evie's medicine and treatment brings me to tears as it has sustained her life. I hope that I can show a glimmer of the gratitude that I feel in my heart as we have been given the gift of life by researchers who may never meet Evie, or other kids on the trial, in person.
Prayers are hugely appreciated as we travel with Lyla and Evie to New Orleans, make our way around a new place and enjoy some beautiful weather!! If my weather channel app is correct we are looking at 82 degrees and sunshine all weekend (: Sounds like a little piece of Heaven!
God is so good. My biggest prayer is that God's love and unchanging awesomeness will shine through our family as we share our experience, meet new people, and reflect on the past three years. That God will bless us, so that we can be a blessing to others.
Love you friends!! Can't wait to tell you how things went.