So here we are. Back at the hospital.

Lily is participating in a research study over the next 40 weeks on the impact of cholesterol on girls with Rett syndrome. The premise: lowering cholesterol levels in the brain (which are unusually high for girls with Rett) will improve gross motor function. Preliminary research is promising. (And if interested, I will email you the research paper).

I’m filled with tempered hope that all these tests my sweetie is, and will be, undertaking (along with 19 other Rett sweeties) will be worth the effort.

She is so brave. She is so strong. And I’m in awe at how she is taking all of these wires and pricks and prods in stride.

Our follow up appointments – thankfully – will be much less intrusive than this first visit.

I will be sure to keep you all updated on the progress.

C & L


6 thoughts on “Brave

  1. God Bless you both!! Sending love and peace to both of you! Big hug for Lily!!! Glass of wine for you Mommabear!!

  2. I admire Lily’s bravery, and your commitment to trying to improve her lot, but also to gaining a better understanding that can help many other patients, too. Kudos to both of you!!

  3. Hi Christine and best of luck with this study. You are raising Lily to be quite the trooper! She is lucky to have such a great mom!
    I am assure you know about this guy but was in LI Newsday yesterday stated that a scientist at Cold Spring Harbor labs, Peter Tonk, has moved a “tantalizing step” forward in the efforts to better understand and alleviate some of the symptoms of Rett Syndrome. Clearly in development and testing on mice stages still! Evidently he is the one with research assistant, Navosona Krishnan, that discovered the PTP1B enzyme correlation to Rett Syndrome 25 years ago as per this article. Just incase you didn’t see it!
    Hugs and kisses to both of you!

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