Today, March 10, 2017, is a day that our family will never forget. Today is an anniversary that Chris and I never thought we would have to recognize. It was a year ago today that our lives dramatically changed. We literally didn’t know what to do, what to say, what to think. We had never heard of the disease that both of our daughters were diagnosed with on this day, one year ago. What we did know on this day one year ago was that we were facing a very real possibility of losing both of our daughters to this horrific, rare, progressive neurodegenerative genetic disease, that today we know very well – NPC1.
While our journey has been heartbreaking and painful, there have been many blessings along the way. The biggest blessing in our journey thus far is our awe-inspiring village of people that has come together for our family. Over the course of the last year, many people have said to us “you guys are so brave.” We appreciate the compliment, but to be honest; it has been very easy to be brave. Why? Because we believe we can cure this disease.Why do we believe we can cure this disease? Because we have been standing on the shoulders of giants for the past year.
People like Cindy and Michael Parseghian, who started this fight against NPC1 when there was literally no hope. And, after losing 3 of their 4 children to NPC1, they have continued to advocate and fight to HELP us move the dial and find therapies and a cure for this disease. Our fellow NPC1 parents, whom we have come to love so much; a community that rallied to our aid, all of whom have embraced us with a hug and said “it will be ok.” Many have flown to Austin, to meet the girls. All of these families have become part of our family.
We are thankful for institutions like the NIH and Rush University Medical Center who have embraced us, along with their wonderful team led by Drs. Elizabeth Berry-Kravis and Denny Porter. Our local physicians and therapists, including Dr. Amy White and Dr. Mary Elizabeth Parker, who have given us so much help and hope, always encouraging us to follow our intuition and have, without a doubt, saved our girls from years of unnecessary neurodegeneration.
Our beloved local hospital, Seton Healthcare Family and Dell Children’s Medical Center (DCMC) who have stepped up and lived up to their motto of treating the most vulnerable. We are grateful for the many doctors at DCMC, who under no obligation, have committed themselves to a complex clinical trial for these children, simply because they saw a need. And of course, The University of Texas Dell Seton Medical School, which is committed to walking “hand-in-hand” and in partnership with us as we aggressively work to find a cure for this disease.
Words cannot express the gratitude we have for VTesse led by Dr. Ben Machilse. When most people hear of a horrible disease, they assume that there is some company out there working on it. That’s not the case. This is especially true in the rare disease world. We thank our lucky stars every day for VTesse and all of the people on Dr. Machilse’s team.
Our many friends, who have stood by our sides from that first dark day. They came running to help us and they never left. Many have put their own lives on hold to save ours. They have dropped everything to go to Chicago with us. To hold the girls’ hands. To be there. To let us know we are not alone.
Our Family — our brothers, sisters, aunts, uncles and extended families that have given us unending support and love and of course, our parents… There are no words to describe the support we have received from our parents.
There are too many people to mention and not enough time. But, to us, they are our heroes. All of them. All of you.
So, why are we so Brave? It is easy to be brave when you are surrounded by heroes.
We can cure this disease. We WILL cure this disease. That is what we believe. That is why we created the Firefly Fund. And that is what the Firefly Fund believes and that is what it stands for.This is our tribe. You are our village. We can’t do this alone. We need each and every one of you.
Belle and Abby are now receiving treatment in our hometown of Austin, TX at Dell Children’s Medical Center. These two little girls have been an immense blessing to our lives and we will continue to fight for them, and all of these precious children, until more therapies and a cure for NPC1 is found. And then we will move on to the next neurodegenerative disease affecting children that we can help find a cure for. We are “all in.”
From the deepest place in our hearts, thank you for the support you have shown our family over the last year. Please continue with your generosity, your love, your support and your prayers. We have come a long way in a short amount of time. But the truth is, we have a very long road ahead of us.
If you haven’t seen People Magazine’s documentary that features our family’s journey with NPC1 this year, you can view it here, www.people.com/andrewsfamily. If you would like to keep up with the Firefly Fund and the amazing things we have planned for these precious children, please visit us often at www.firefly.fund