I have been on a bit of hiatus from all writing as Katelin and I settle in our new home of California. While I have been consumed by all the things parents of special needs children have to do after such a drastic move, the Rett research world has sped along at lightning speed.
The first thing I want to touch on… is that parents will be reimbursed for all reasonable travel costs. This is amazing. What a wonderful, amazing gift Neuren is giving all of, first they are working hard to cure our girls and now they are helping us make that happen. I know first hand how daunting those costs can be, and I have also been the recipient of an incredible amount of aid, which I will never ever forget and I am seriously indebted for the rest of my life. See www.rettland.org for more information.
But, today a parent announced their daughter is starting the pediatric trial NEXT WEEK.
I want to dance around the living room and shout it for all the world to hear. NEXT WEEK!
I am so grateful to these parents, it’s one thing to put your grown up child in a trial with a drug already tested and shown safe in adults, it’s an entirely different ballgame when your daughter will be the FIRST pediatric participant.
The emotions I’m feeling are so overwhelming and I’m certain they are very similar to those of all the other parents. I feel the electricity that you feel when your team is up to bat, and that first kid gets up there, steps in the batter box, hits the bat on the plate, chokes up on the bat and stares the pitcher down…. you clasp your hands, you’re just hoping for a hit, just one little hit…. the throw! Time seems suspended as you wait…will it be a hit? A ball? A strike?….
I don’t have any doubt in my mind that Neuren is pitching right into the strike zone, and our kids are going to hit those balls right outta the park. 🙂
For more information see www.rettstudy.com