Anna Liberty

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

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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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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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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New Video about Anna Liberty and XP

I finally finished this little project, and I’m excited to share it with you.  I wanted to make a short informational video about Anna and Xeroderma Pigmentosum. I’ve added it to the home page of http://www.annaliberty.com.

I hope you like it. If you do – please share it with your friends!

 

 

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Anna’s Mom 2014

Today I am grateful for Anna’s mom. Libby is an incredible, hard-working, lovely, patient, forgiving, and giving person. She gives of herself all of the time, with little thought for herself. She takes care of a bunch of stranger’s children as a school teacher, in addition of taking care of me and Anna.   She’s so wonderful, that a couple of years ago Libby was featured on a great blog called Beadhead Moms. It’s a beautiful post about Libby, and it’s worth re-visiting.

This morning, Libby reminded me that it was three years ago today that a 10-month-old Anna woke up with her eyes swollen shut and a terrible sunburn on her head, face, arms, and hands. We had gone to the zoo on the Saturday before Mother’s day, and even though we’d put sunscreen on Anna and kept her shaded much of the time, her special skin was no match for the spring sun’s UV rays. We didn’t yet know that Anna had Xeroderma Pigmentosum, a very rare genetic mutation. You can read the story on our first blog post.

Later this morning, after getting Anna ready for Church, Libby posted this on Instagram:

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To Libby: I love you.  The best decision I ever made was to marry you.  You are the perfect mom for Anna, and you’ll be the perfect mom for Jayne.  Thank you for being my wife, and for being a wonderful mom.

To my mom: I love you!  Thank you for raising a wonderful family. Your tireless sacrifices and your beautiful testimony have made me who I am today.

To all of the mom’s out there, you are wonderful and loved for your hard work, sacrifices, and love.

 

 

Happy Mother’s Day!

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Anna’s New Play Tent

Every Easter, our family has an outdoor picnic at our aunt’s house. It’s been a tradition for many years. We have great food, an Easter egg hunt, games, and more.  And for the last few years, Anna has had to stay inside to eat.  It’s just too difficult to eat with mittens and a big plastic shield over your face. She would come out with her gear after lunch, but during much of the party she’d be stuck inside.

A few weeks ago, Anna’s aunt Sophie found a fun PVC outdoor playhouse design online.  She had a brilliant idea to modify it so it could be a UV-free play area for Anna.  We agreed and Sophie started planning .  Anna’s mom and Sophie went to the fabric store and picked some UV-blocking cute fabrics to make the tent.  PVC was purchased.  And just a few days before the Easter picnic, Sophie teamed up with her dad (Anna’s Grampa B) to put it together.

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Sophie and Grampa B hard at work.

 

Sophie and Grampa B worked tirelessly for 2 or 3 days (or more) to build the tent.  They worked almost all day each day on it!  Sewing, modifying, sewing, cutting, sewing, ironing, sewing, testing, and more sewing. We provided some pizza and moral support.

 

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Tools of the trade

 

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The PVC tent frame

 

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A work in progress

 

The day before our Easter picnic, the tent was finished!  Sophie paid careful attention to make sure no unsafe sunlight would get in the tent. She added a cute border around the bottom. A strip of UV-safe plastic was added to the roof to let more safe light in the tent. They added a double-layered curtain behind the entry to keep it safe.  it was beautiful and safe!

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Anna running around her new tent.

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Anna entering her play tent for the first time.

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Anna and her cousins having fun!

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Anna, hanging out with uncle Bridger, waves hello!

 

Anna had a great time in her tent. The best part was that her cousins joined her in the tent for the picnic!  It was a hit for Anna and for her cousins, too.  We look forward to many picnics and outdoor activities with our new, amazing UV-safe play tent.

A HUGE thank you to Sophie and Grampa B for their hard work!  We love you and appreciate all you do!

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Sophie, her baby, and Anna pose in front of the tent.

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