Anna Liberty

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

Catching up with Anna Liberty

It’s been many months since our last post here. We’ve been pretty dang busy! We won’t bore you with the details – instead, we just wanted to catch you up on how Anna is doing, and show you how quickly she’s growing up!

Anna is enjoying her second year of pre-school and is looking forward to Kindergarten next year. We’ve had some fun adventures with Easter picnics, trips to the pool, the zoo, and the aquarium.

We’ve noticed some new freckles on Anna’s cheeks, which is kind of scary. We work hard to keep her out of the sun, but it can be difficult sometimes, especially in our temporary home right now. But she is happy and healthy and we aren’t too worried.

Enjoy these fun pictures of Anna!

anna swing

anna peeps

cousins

anna crocodile

anna dad at aquarium

anna sandpile

anna horse

anna jayne pro

anna jayne pool

anna rocks

Anna_at_zoo

anna aquarium

At the Hogle Zoo, Anna loved the sea lions and seals.

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Car Tales

A few months ago, I was on my way to drop Anna off at her Aunt Sophie’s house when we had quite a scare.

With just a few blocks to go, I stopped at an empty four-way stop and started inching forward. I glanced to my left and saw a truck coming fast toward the intersection, showing no sign of stopping. I slammed on my brakes just before the truck rammed into the front end our little car, sending us spinning.

As the dust settled, I quickly turned around to see if Anna was okay. She was still in her car-seat and a little shaken up, in every meaning of the phrase.  I hopped out of the car, yelled something at the driver of the truck, and helped Anna out of the now-totaled ’98 Honda Civic.  Luckily, no one was hurt. I felt grateful that I glanced left and hadn’t kept driving into the intersection.

The  old Civic was done for.

The old Civic was done for.

The very night of the accident, Libby and I were searching the local car listings and found the perfect car to replace the old Civic.  We test drove the Chevy Equinox that night and made an offer soon after. Before we knew it, we had a new car!

There were two things we missed about the old Civic: 1) No monthly payment and  2) It had special UV-blocking film on the windows, so Anna could ride without her special hat/hood, gloves, etc.

While there are many months to go until we have it paid off, today the car is now UV-free!  After contacting the XP Family Support Group, we learned that 3M was going to donate UV-blocking film for the car windows, and a local business (JC Automotion) volunteered to install the film on the car for free.

I spoke with Jesús of JC Automotion, and he was more than happy to help. He did an expert job!  I highly recommend him to anyone who owns a car. Not only does the window tinting look amazing, it blocks the harmful UV rays – and will keep the car cooler on hot Utah desert days!  You can reach them at (801) 599-3108.

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We are so grateful to again have a car that protects Anna from the sun. THANK YOU to JC Automotion, the XP  Family Support Group, and 3M!

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Someone is going to win this car – will it be you?

See this car?

raffle_01 (3)

It’s a brand new.

Someone will win this car.

 

raffle_01 (6)


2013 Chevy Cruze.

It could be you.

Not only could you be the winner, but you’ll also be helping families dealing with Xeroderma Pigmentosum. 100% of the raffle ticket costs go to the XP Family Support Group!


raffle poster

Join the facebook event for the raffle – and invite your friends!

Tickets are $40 each or 3 for $100.

Visit http://www.xpfamilysupport.org/storechevyraffle.html to purchase tickets or see a member of the XP Family Support Group (like me!)
FIRST PRIZE: 2013 Chevy Cruze
2nd Prize: $250 Gas Card
3rd Prize: $100 Gas Card

Good luck!

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Sun Kissed: A New Documentary about XP

UPDATE: The full documentary is streaming free on PBS.com. Click here to watch!

Debuting on Thursday, October 18 is a new documentary titled “Sun Kissed” that tells the story of one family’s experience with Xeroderma Pigmentosum.  I can’t wait to watch it!

You can check your local listings here to see when it airs on your local PBS station.

The children with XP in this movie have a type of XP that’s a different than what Anna has.  Anna’s is XP-D, and does not cause neurological degeneration. But Anna and the kids in the movie both have a 10,000 times higher chance of skin cancer due to their Xeroderma Pigmentosum, and both need to avoid all unfiltered sunlight.

Here’s a trailer for the movie:

I look forward to learning more about XP and learning about the plight of the Navajo tribe.

I hope you will watch it, too. And share it with your friends!

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