A Day to be Thankful

imageOn this very day, three years ago, I was given a great gift-Belief-Belief that all was possible; that a treatment, a virtual cure, was possible. And, I have Neuren, Margaret Brimble, and a host of people all over the world to thank for that, they know who they are- the many who helped  get us to Texas. I am thankful every day for what you gave me and what you did for Katelin.

In this uncertain world, I have one certainty, that the day is coming when my child will talk to me, that one day Rett syndrome will, like the video below, come full circle- that what was stolen will be returned.

So, to New Zealand and Australia my thoughts of thanksgiving fly to you, thank you for belief in circles.

This entry was posted in cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide and tagged , , , , . Bookmark the permalink.

One Response to A Day to be Thankful

  1. Alessandro says:

    Hi Melinda, I found your web site just snooping on the web. My name is Alessandro and I’m writing you from Italy. The reason of my web research is easy, we are in the same boat, this year in september we’ve got the DNA test results for my first daughter Letizia and we are facing with this nightmare called RETT. Actually Letizia started to have some problems in March this year but only in September as I wrote before we had the test result. my daughter is almost 5 years old and for the time being she is still able to do several things like walk very well, she can do stairs by herself and use hands even if her clapping does not allow her to do things as she was used to do before.
    The reason of my e.mail is first of all to ask you a feedback on Trofinetide, I’ve read in your articles this drug mentioned several times and I know from the Neuren website that trials are conducted on several girls. is it possible to know when the last trial will be ended and most of all, do you know which kind of improvement this Trofinetide can provide? do you have direct experience with Trofinetide and can you advise about results after its use? of course I know that this won’t be the solution of our girls problems, but if this drug can be helpful till the genetic research will find the way to defeat RETT Trofinetide for sure could be of help for all girls having RETT and their family.

    I’d like to tel you that also in Italy a lot of research are and will be conducted, and together I hope that soon we will find a way to give back our daughtrd their precious life,

    Thanks for your kind reply, all the best

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