Anna Liberty

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

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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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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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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Great News Story About XP – Meet Andrea

San Diego doesn’t seem like the ideal place for someone with XP.  Lots and lots of sunshine!  However, with the right protections in place, San Diego would be just fine.   It’s a great place for Andrea Monroy, a girl we met at our trip to the XP Family Support Group meet last year.

Andrea was interviewed by the local ABC news affiliate recently.  They put together the BEST news report on XP that I’ve seen.

XP Newsstory

Please watch and share this video.

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Hazel Avery

While XP is extremely rare, there are others out there that suffer from it. One of those people is a little girl named Hazel who lives in England. She’s currently raising money to build a UV protected playplace at her home. You can learn about her and donate on her website, http://www.hazelavery.com/

 

hazel

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Cameron Bricker: A Happy 12-Year-Old with XP (News Story)

At the XP Family Support  Group conference a few weeks ago, we met some wonderful families who face similar challenges.  One of those is the Bricker Family, whose 12-year-old daughter Cameron was diagnosed with XP at age 2.  Cameron’s XP is a different type than Anna’s, most notably in that Cameron also suffers neurological problems in addition to the extreme UV sensitivity that she and Anna share.

Cameron was featured recently in a very well done news story on ABC RTV6 in Indiana.

You can read or  watch her story at this link.

Cameron’s mom and dad work tirelessly to protect her.  They also do a considerable amount of fundraising for the XP Family Support Group.  I hear they’ve even set up a raffle where you can win a CAR for supporting XP coming soon!

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Meeting others with XP

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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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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