A decade with Rett Syndrome

I started writing a post regarding the 10 things I’ve learned in the 10 years of living with Rett Syndrome. But I was too tired to finish it. And it would not have been an uplifting read.

Instead, I’m sharing a photo of the most incredible human I’ve ever met – my daughter Liliana who was diagnosed with Rett Syndrome exactly 10 years ago today.  

If you get a chance, send some positive vibes our way today. We sure could use them.

Momma best with her cub

2 thoughts on “A decade with Rett Syndrome

  1. Endless and boundless love and best wishes to you and Lili and Steven, especially as you find yourselves back in ‘Duh Bronix’––where it all started for you. I’m not sure you understand how much of an inspiration you’ve been to me and, I have to assume, to so many other mere mortals. And I’m positive you didn’t begin life choosing to be an inspiration to anyone. I do know you always chose to be the best. It’s just that you never realized how much your best would have to encompass. And with all that––you’re still the best. Grazer

  2. Sending you love and prayers today. Lilly is an amazing girl with the best laugh and one of the brightest smiles I’ve ever seen!! You have been her Mom ,her friend, her nurse and advocate from day one, and you do it all with love, intelligence and grace. Here’s to your next 10 years, both of you❤️❤️

    Sent from the all new AOL app for iOS

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