Anna Liberty

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

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

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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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Anna’s Dad is on “Who Wants to Be a Millionaire!”

This post will be a departure from what we usually write about here on AnnaLiberty.com. It’s the story of my appearance on “Who Wants to be a Millionaire?”. It’s long, but I think you’ll like it!

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I grew up watching game shows with my family, and my dad always told me I should be a contestant and win some money!  So when I heard that auditions for “Who Wants to Be a Millionaire” were coming to Salt Lake City, UT (not far from home), I knew i had to try out.

I took a Friday off work and went early that morning with my brother to the audition.  We arrived and were greeted by some young, enthusiastic producers.  A large group had already been there before us.  We watched them leaving with their free “Millionaire” t-shirts. Some grinned and had a spring in their step, others looked disappointed. They had just taken the first step: THE TEST.  We were next.

Remember back in high school, when you had to sit down with a #2 pencil and a scan-tron sheet?  “Millionaire” auditions start the exact same way.  The test had thirty questions, and we were given ten minutes.  (For you non-math-majors, that’s only 30 seconds per question!)

The test had questions from a variety of topics, just like the show. Math, history, geography, and a lot of pop culture. I raced through the test, answering all of the questions I knew first. Then I went back and made my best guess on the others I didn’t know. I finished just before time ran out. Our tests were slipped into numbered envelopes. As they took them to be scored, we were told to remember our number. Then, we waited.

The producers came back and read a list of numbers. My number was included!  I think there were about 40 or so people in my group, and about 10 of us passed the test.  Those who passed were invited back later that day for an interview.

So, I went back to my brother’s house and started working on some paperwork they gave us.  The first part was legal and contact stuff, and the second was all about finding out if I would be an interesting enough person to put on the show. Here are a few of the questions:

  • Are you a member of any strange or unusual clubs?
  • What are you known for among your family & friends? (embarrassing stories, special or unique talents, etc)
  • What is your biggest claim to fame win? (ex. Contests, medals, funny walks, etc)
  • What is the craziest or most unique thing you have ever done to make money?
  • What would you do with the money if you won? How would $1 Million change your life?

I did my best to provide the most hilarious, interesting, and clever answers I could think of. I told them about my acting career as a kid, my obsession with Disneyland, and of course, being Anna’s dad and her XP condition.

When I came back for the interview, a large group of us (about 40) were herded in to a room where there were three tables on one side. These were the interview tables. We were called up one at a time, and the producer read over our answers to the above questions. When my name was called, I jumped up and made my way to the table with extra enthusiasm.  He was impressed with my interesting stories and told me that I had made it – to the SECOND interview. I was sent down the hall to wait for my second, video interview. That interview was with two producers, in front of a camera, where they asked me some questions as if I were on the show. When I got each one right, I shouted and jumped and reacted like a crazy guy. They ate it up, and told me that I’d hear back in a month or so.

On Monday morning, less than 48 hours later, I was shocked to get a phone call from “Millionaire.”  “Would you be able to be in Stamford, CT in two weeks to be a contestant?”  My answer was YES!  I made arrangements, and started cramming my head with as much trivia that I could take.

We arrived in NYC a few days early to see a Broadway show and take in the sights.  My sisters Stephanie and Katie (and Katie’s husband Russell) joined me on the trip. I got a good night’s sleep before the day of the taping, and arrived ready to win big! Upon arrival at the studio, they took  away our cellphones and anything we brought with us, and we were told a lot of things by their lawyers and producers.  After spending all day in the waiting room with the other contestants, I was told that I’d have to come back the next day. I didn’t sleep as well that night.

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Me and Terry, moments before taping my episode!

I came back to the studio the next morning and quickly was sent to hair and makeup. I was taken backstage where they put a mic on me.   My sister Stephanie was in the audience. Before they called me up, Stephanie got the crowd chanting my name! I came out pumped and ready. Terry Crews (this guy) is the new host. He called my name, I went to the podium, and….

…you’ll have to watch the show to see what happened next!

My episode is airing on Thursday, Oct 16th. I’m the last contestant on the show that day. You might want to watch on the 17th, too!

Go to http://millionairetv.dadt.com/local-listings/ to find out where and when Millionaire airs in you area.

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Anna the Artist

 

Anna has always enjoyed drawing with crayons and markers. One of her favorite toys is a small whiteboard.  Recently, Anna has been learning how to draw animals and Disney characters. That’s my girl! For four years old, she’s not bad. Because I’m her dad, I think she’s an artistic genius. 🙂

 

First up, is the big cheese himself, Mickey Mouse.  I showed Anna one time how she could draw him, and reminded her of some steps, but this is all her!
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Next, we have a pig. Notice the pig nose, the great smile, four legs, feet and a VERY curly tail.

 

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And finally, Mike Wazowski.  Mike’s pretty simple, so he’s a great place to start! Anna loves adding his little horns.

 

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The Results Are In

Last week we were a bit anxious waiting to hear back from the genetics testing done on Jayne’s blood.

As I wrote in an earlier post, we had decided to look on the bright side of whatever diagnosis came our way. If Jayne doesn’t have XP, we will be so happy for her, knowing she wouldn’t have to suffer the trials associated with XP. If she does, we’ll be happy for Anna, because she’d have a sister with the same rules and conditions.

Our prayers were answered, and we learned that Jayne does NOT have XP. She is a carrier, like Anna’s mom and dad. We are thrilled to know that Jayne won’t have to deal with XP personally.

Now our challenge is learning how to raise two girls who have different rules about the daytime and going outside. We are grateful that Anna has been so patient and understanding with her own XP.

We’ve tried to talk with Anna a little about how Jayne doesn’t have the same special skin that she has, and that she can be in the sun without a hat. But Anna was too busy having fun and playing, and it didn’t quite click with her yet. She is only 4 years old, but we plan to be open and positive about it with her.

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Anna Liberty is now a big sister!

Since starting this blog, it’s been wonderful to share Anna’s adventures and our experiences with her Xeroderma Pigmentosum. I’ve loved focusing on Anna here on the blog especially since it’s named after her.

But now I have a wonderful problem – I have another daughter! Her name is Jayne Summer, and she’s a beautiful perfect little redhead bundle of joy. She is healthy, good-tempered, and did I mention perfect? Her Mom makes the most beautiful babies. Here’s proof:

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The “wonderful problem” mentioned above is how to focus my blog posts now. The day after Jayne was born, we sent her blood sample off to a genetics company. In a month or so, we’ll find out if Jayne has XP like Anna. Jayne has a 75% chance of NOT having XP, and a 25% chance of having it. I posted our thoughts about this a few months ago. If she does have it – I might need to change the name of this blog! Either way, we are just thrilled to have her part of our family.

Welcome to our world, Jayne Summer!

 

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