Trials and Tribulations

There is so much promising research happening with Rett Syndrome right now. For this momma, it’s overwhelming to digest. There are currently 3 clinical trials that Lily is eligible to participate in and all three offer the potential to help with some of her symptoms.

Clinical trials are no joke. We participated in one a few years back and it’s a lot of work. Lots of hospital visits and monitoring. And a new medication to remember to give her every day.

I’ve done a lot of poking around, reading medical papers, have consulted with two Rett specialists, a bunch of Rett mommas and have decided that Lily will be only participating in one trial. It should be starting in late fall and I’ll be sure to send updates.

In the meantime, we’ll just be enjoying life in our little oasis on the UWS, trying to get this kiddo to gain some weight. Come and visit if you’re in town!

Love,

C & L

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4 thoughts on “Trials and Tribulations

  1. She grows taller and more beautiful by the day!!! Will be praying the trial is successful, and look forward to the updates!!! Love & Kisses to both of you!

  2. Eat cupcakes. Love u guys so much. You know the prayers never stop. If you ever want a day in Glen Rock we are here too. All summer.
    Love you to the moon and back

  3. I am always in your corner C & L Cuz team!! Those pictures are gorgeous of her. She is such a beautiful little girl!! If you need anything anytime, especially during the trail stages…please let Al or I know! I am only a car…or subway ride away now. Thinking and praying for you both. xoxoxo

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