I love all our girls and boys, but Jilly has a special place in my heart, in many of our hearts. Her mom has been a rock for many of us. Jilly is one of the first other Rett girls I met and Katie was nearing 13. I’ve known her since she was just a little pipsqueak. I fell in love. Who could not. Always with a bow in her hair, great big toothy smile. She stole a piece of my heart. And I know I’m not even close to the only one who feels that way.
Our Jilly has been through too much, like so many of our children. She is a WARRIOR! She participated in the Phase IIb Trofinetide study. She is a ROCK STAR. She is in need. She needs us all. Her family needs us. And we are being there. I love my Rett family.
Yes, we need a cure; yes we need a treatment; but, right now, we need Jilly to be better. Jen says she’s “getting by with a little help from my friends”. Well, many is the time we’ve all gotten by with a little help from Jen.
I’m asking people to take a moment, and in whatever fashion you do your praying, please send positive thoughts to our Jilly and keep #JillyStrong
The sweetest song would be her sweet giggle, out of tune or not. We’re here for you.