Taking a Break


I would not normally post anything political on this blog, however I am taking a break from this blog for a bit. The current political crisis in my country is demanding my attention. In many ways, Katie’s journey will be affected by our current administration and the overwhelming plummeting that our country is taking on a daily basis is proving too much to even think about anything else at this time.

For those of you at Neuren and others who have a vested interest in my girl, please keep her in your thoughts as next month she will undergo spinal fusion. She has a fairly high chance at some complications given the degree of her kyphosis and BMI; however her lungs are beginning to collapse and this was my red line. I will let you all know how she does come August.

I’d like you all to know that I have read the updated timeline and, while of course I wish it would move along just a bit faster, we are patiently waiting without one ounce of doubt that when Trofinetide Phase III gets here it will be a homerun. Until August then, have a great summer in the Northern Hemisphere and may the winter not be too harsh for the Southern. 😉


This entry was posted in baseball, bone deformity in Rett syndrome, kyphosis, Neuren Pharmaceuticals, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III and tagged , , , . Bookmark the permalink.

2 Responses to Taking a Break

  1. Rose and Renee says:

    Mel and Katie
    The world we live in!? 😩😠😡
    You’ll both be in my thoughts during this break and especially in August. Good luck Katie. We love you and your Mom very much.

  2. melelllan says:

    Yes, Rosemary what a world, children are locked in cages and pro-pedophilia people run for office. There is something seriously messed up. Love to you and Renee. May people all come to our senses soon.

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