Anna Liberty

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

Anna’s first video

A few weeks ago, I showed Anna this website. I guess I never thought about sharing it with her before…or maybe now she’s just old enough to realize what it is.  She told me she wanted to start posting here – by using her favorite thing – YouTube.

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2nd grade

Right before sunrise, the first day of 2nd grade.  I first asked Anna to hold up this photo and smile.  Then I said, “Anna, just hold it however you’d like.”

The result is perfect.

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Anna’s Aunt Lizzie is Famous!

Anna’s Aunt Lizzie is featured in a new video produced by Barcroft media, a popular producer of incredible videos shared on youtube and hundreds of media outlets.  Their youtube channel alone has over 3 million subscribers.

Within an hour it had nearly 1500 views already.  We’re proud of Lizzie for her bravery and willingness to share her XP story with the world.

And check out Anna’s little kick at the end of the video!

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Superheroes

Young Peyton is like Anna. A normal kid inside and at night, but always wary of the UV rays of the sun. The video shows Peyton as the superhero he is.

A community came together and did something incredible for this special young man. Watch the video to see what they did.

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Peyton is an incredible kid. But he’s not the only hero.

His parent, his friends, and this community are superheroes to me.

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First Grade!

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Our new home is now safe!

Today is a wonderful day! After a busy year and a magical Christmas, today Nate from Glamour Glaze came to our home. We might have been more excited for Nate’s visit than we were for Santa’s!winter home

 

Thanks to the generosity of Nate and Glamour Glaze, 3M, and the XPFSG, our home is now 100% safe for Anna. We can open the curtains and blinds and let the safe sunshine into our home!

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Incredible story about a family with XP on DATELINE NBC

It was surreal to watch Dateline on Sunday, June 14th.  The second half of the program (Beginning about 22 minutes in) told the story of the Feltner family, another Utah family that deals with Xeroderma Pigmentosum.

Dateline did a great job explaining the realities of living with XP.

I urge you to watch it.

The video is online for free until 07/19/15.

Here is the link:

http://www.nbc.com/dateline/video/dateline-june-14-2015/2871922

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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

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anna aquarium

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

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Introducing…Little Ted!!

Our friends across the pond are doing something truly incredible for those that live with Xeroderma Pigmentosum.

I don’t think I have words to express how wonderful I think this is, so I”ll just invite you to visit their blog and read about what they are up to:

Introducing…Little Ted!!.

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“Millionaire” update

Yesterday (Oct 16) my first episode of Who Wants to be a Millionaire aired on TV!  It was crazy hearing Terry Crews say “My Man, Josh Tenney!” and see myself on there.

I got this one right!

I answered four or five questions right on the first day – but then time ran out.

I’m looking forward to seeing today’s episode -where I get to mention Xeroderma Pigmentoum (XP) and tell everyone what I’d do with a million dollars!

See when it’s playing near you: http://millionairetv.dadt.com/local-listings/

Here is a preview of my day #2:

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