Katelin loves space. She loves all things sun, planets and stars; that’s why I’ve chosen this “theme” for her blog, and because we are on a journey that reaches far beyond what will happen in Texas.
And it all began with Facebook!
Over a year ago someone posted to Facebook about a possible glimmer of hope: NNZ-2566, a synthetic compound that appeared to help traumatic brain injury patients recover or regain some of their function. The pharmaceutical company Neuron was trying to get FDA approval for a study with adolescent Rett Syndrome girls and women, the first study targeted to this age group. All the world over, parents watched to see if it would get the go ahead. Waiting lists were made of children whose parents were willing to place them in the study. I signed Katelin up and then began the waiting game. Would the FDA give approval….YES! Then the longer wait began. What would be the criteria, would Katelin fit it? When would it start? When? When? When?! and would we get the call…..YES! in April 2013 Katelin was sent an acceptance letter.
Tomorrow, after nearly a year of hoping and waiting, we will make our first trip to Texas for baseline testing. This is only the beginning. If Katelin qualifies after this testing we will be off in November.
But, it was no simple matter getting this far. First came the yard sales and tons of donations! (Still have a LOT left, too!)
And then there were the cash donations from family and friends and sometimes even strangers, who came by the yard sales, didn’t buy anything and still gave a donation. And the amazing gift by a friend’s company of round-trip airline tickets. The cards were all so sweet, too!
And I am eternally grateful to Tracy Shaughnessy of Nutter, McClennen & Fish who handled all the legal documentation and got approval from the court!
So, as we get on the airplane tomorrow, I think it is somewhat symbolic that we are going to Houston, home of Houston Space Center. I think maybe I’ll whisper “Houston the Eagle has landed” or better yet, “One small step for a girl, one giant leap for a cure.”