We took Anna to a safe indoor playground at a local indoor play place. 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.