Today is a great day. It’s Anna’s mom’s birthday! Yesterday Anna was telling us all about how we should have a “bewthday pawtee” and that Mom should “blow the candles on the cake.” And don’t worry, we will.
Libby is an incredible mom to Anna. She has faced the challenge of XP with a positive, happy attitude, and is such a great example to Anna an everyone around her.
Last summer our friend Wendy posted about Libby on her wonderful BedHeadMom.com blog. Trust me, you’ll love reading this.
Happy Birthday, Libby!
WE LOVE YOU!
We took Anna to a safe indoor playground at Provo Beach Resort. She loves it!
The above video is short – and is a masterpiece of multiple angle editing. Ha!
Anna’s mom plans many return trips here during the summer.
The next video is quite a bit longer. It’s just fun to watch her play!
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.
Please watch and share this video.
See this car?
It’s a brand new.
Someone will win this car.
A 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!
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
Here in Utah we’ve had a cold, snowy winter, as I mentioned in my recent post. This last week nature dropped about a foot of the white stuff all over! Anna loves the snow, as you can see here. We’ve even brought in a bucket of snow so Anna could play in it! (Click any picture to see it larger.)
A friend asked Anna’s mom the other day if we enjoy being able to go out now that the sky is completely cloud covered. Sadly, cloud cover doesn’t stop UV. In fact, the snow makes it even harder to deal with because it reflects UV even more than the ground or sidewalk.
Since Anna loves the snow so much, we decided to finally take her out to play in the snow after dark. We didn’t have to go far.
Bundled up, Anna had fun throwing snowballs and just walking through the snow. The snow reflected the street lamp and our porch light well enough we could see just fine.
I made a little ramp right outside our front door – a perfect little sledding hill for little Anna. Thanks to Grandma Debbie, we had a new sled to try out.
It’s pretty dark, but we have one fun little video of Anna taking the sled on a run. Turn up the volume to hear her say
Note: Sorry about the Vertical Video Syndrome.
Anna had a blast, but got cold pretty quickly. We snapped one quick family photo before heading back inside to warm up. We’ll be going out again soon.
You might be thinking that you’d rather not to meet him alone in a dark alley. But you’d be wrong. Bridger may be big and strong, but he’s the kindest, most awesome person you might ever meet.
This picture represents him a little better:
Bridger is Anna Liberty’s uncle. He’s a great 15-yr-old kid who plays football, serves in his Church, and is pretty much the most popular kid in his class. He’s also one of Anna’s favorite people. Bridger has taken Anna on trips to the museum, and every Sunday afternoon he spends time playing with her. And he’s been a great babysitter from time to time, too.
Recently, Bridger wrote a paper for his Biology class on Xeroderma Pigmentosum (XP). He did such a remarkable job on it, I thought readers of this blog would enjoy reading it.
Here is a link to his report: Xeroderma Pigmentosum Project
Bridger – you’re a great Uncle to Anna. Thanks for being part of her life, and thanks for helping to educate others about XP.
Here’s another picture that really shows you who Bridger is:
She doesn’t seem to like the number 5.
This week in Utah it’s been very cold. VERY cold. And most people don’t like it. But I have another perspective.
See? Very, VERY cold! So cold that one friend from California posted on Facebook that she saw six Utah friends all post pictures like the one above right in a row on her timeline. So cold that I was able to take the following picture the other morning. I stepped outside to toss a diaper and noticed that there were snowflakes just sitting on top of a plastic storage bin.
Most people seem to really hate this cold weather. I’ll admit to sometimes complaining about how cold it is. They talk of nose hairs freezing and cars not starting. Nobody goes outside and they get stir crazy inside. Did you catch that? NOBODY goes outside. This is the time of year that our family is just like everyone else! There aren’t any kids playing out in 5 degree weather- and if they are, they are just as bundled up as Anna is the rest of the year.
So I’ll take the cold weather for a while, and appreciate what it means to Anna and others with XP. When nobody goes outside, they get a taste of our indoor living.
That said, I need to get some gloves. My hands are freezing…
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/