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Response to Tony

  1. 138 Posts.
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    @TonyWAIW I don't know why I couldn't reply in the thread you tagged me, but I did want to respond

    You asked how I was feeling today...
    Well, Tony I'm feeling utterly relieved. I have believed this day would come from about day 2 of Katelin's trial and to have it finally be here is just incredibly relieving. Knowing I don't have to write another phrase that goes "hopefully the FDA approves" makes me exceedingly happy. I'm SO excited for the families that will try it for the first time and for all the first words, first steps, first laugh they get to experience. I'm over the moon for the littles, just diagnosed who won't know a life without it and to see how they do. Imagine regressing, within weeks getting a diagnosis and the doc handing you a script for trofinetide; I have dreamed of THAT for nearly 10 years. And I will never forget what you all on here did for us, so I am HOPING today made you ALL millionaires. I have to say that has been on my mind for years. I could NEVER repay you for the gifts you gave me, so if I in any way helped you become the top %'s in your country (as we say in America) I feel I have repaid to some degree the debt I owe you all. I am excited about what it means for us as a family, for her to have her first conversation with her sister, Debbie. Being able to take her anywhere, to stop having one way conversations. You guys don't know this, but she's put her head through the walls of our apartment so many times that there is $3500 damage. I am excited to repair that knowing it won't need to be repaired and I can take down the 3" padding that lines every wall in my apartment at her head height. I am excited about getting matching dishes that aren't made out of plastic. The little things to me will be so huge. I can't even express the relief of her not screaming and no new scars on my arms and face. And YOU guys, all of you have given me that. That is why I say some degree of the debt I owe. How can one put a price tag on any of that? I can't it's immeasurable to me. I hope you all get great homes, with pools and playgrounds for your kids and apartments for elderly parents and each of your kids gets the car of their dreams. I could go on and on here. But, I know that if you were to ask that to me in person, I would just lean into you and weep.
 
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