Anna Liberty

A girl who's one-in-a-million

Meeting others with XP

on November 8, 2012

I’m up late tonight waiting for the dryer to finish, so I can switch the laundry. You see, tomorrow we are going to finish packing and take a flight to Sacramento, where we will meet for the first time other families and individuals who also deal with Xeroderma Pigementosum.

I’m nervous and excited at the same time. Questions fill my mind. How different is Anna’s variation from the others? How do we do as parents to keep her safe compared to the others? Will the conference fill me with hope, or will be be heartbreaking getting to know those with more extreme variations of XP? There are about 30 families coming to Sacrament to this gathering. And this is the BIG gathering! It shows you how rare this disease really is.

I do know that I’m grateful to the XP Family Support Group – and mostly Michele Milota. Her passion for helping others with XP is inspiring. I look forward to learning from her and other XP parents. I look forward to Anna playing and meeting other kids who can’t play in direct sunlight. And heaven knows that we can use a break from work!

So I’ll be back with a report (and pictures) from our trip. Bon Voyage!

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One response to “Meeting others with XP

  1. omaof5 says:

    We look forward to meeting Anna and her family too. I find myself unable to sleep as well, having similar thoughts too. Our 2 year old son, Oliver was just diagnosed with XP,6 weeks ago. The timing of this conference could not have been any better. Safe travels to Sacramento. We’ll see you there! Noelle K.

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