LIL' MISS EYEBALLS: Rare Moments in Sharing a Rare Syndrome.

Coming home, after the 4p - Conference in California, I had high ambitions of writing about our time treasured, together. Our cup has been so full and overflowing that I haven't been able to express, into words, all that was experienced. Where to start?

This was our second conference but our first, REAL attendance at a conference! (Many of you know, our first conference, two years ago, was mostly attended in the ER and doctors office.)

Meeting another family, living with WHS, from Montana, was another highlighted first!

Because of Phia living with Wolf-Hirschhorn Syndrome, we've met this kind of generosity...a family of people, of deep longing, to see each other, where they are.

We are more than missing some genes.

Sophia and her friends are physically and mentally delayed, because of their broken chromosome but I can be in their presence and see more of what they are made of...unconditional LOVE.
She and her friends, living with this rare syndrome, clearly radiate love and I can't soak up enough when I'm around them.
I'll let these pictures show you what I can't put into words. Since we were in Hollywood why not let the pictures be the voice.

And action...