Back in May 2011, we had a frightening weekend that changed our lives. I wrote about it on facebook and in an email to friends. I thought I’d share it here. I’ve updated it a bit and added some relevant photos.
My little Anna turned 10 months old recently, and it was a rough day. I thought I’d share some detail about what happened. I’ll probably write too much and be over dramatic, but hey, I don’t do that too often. First, a little history:
Last summer, Anna got a bad sunburn on an overcast day outside the temple at her aunt’s wedding. Anna was only 4 weeks old, and because of the cloud cover we didn’t think sunblock was necessary.
Taken not long after Anna’s first sun exposure.
The next day, it was heartbreaking to see that she had been badly burned. Her tender new face began to blister and peel.
We worked hard to keep her out of the sun the rest of the summer. This spring we’ve had several beautiful sunny days in between the rain and snow – and even though we’ve used sunscreen (most of the time) Anna’s still gotten a little red under her eyes with sunburn. Sometimes we thought it was just an allergic reaction to sunscreen in her eyes.
On Saturday, we took Anna with Libby’s family to the Zoo. Anna absolutely loves animals and waved her arms with excitement anytime she saw something furry or feathered moving around.
Our family at the Hogle Zoo
We slathered her in sunscreen a couple of times, and thought we did a good job keeping her in the shade, keeping her hat on, and keeping her in the stroller covered up. But four hours at the zoo on a very sunny day was still too much.
Grammy re-applying Anna’s sunblock halfway through our day at the zoo.
The next day (Sunday) she was red under her eyes again and we could tell she was it pain from it. On top of that we think she’s teething too! We gave her infant Tylenol and that seemed to help a bit, but not enough. She woke up every half hour through the night crying, and only slept when in our arms. On Monday morning her eyes were swollen and she wouldn’t open them.
Now a side note: Many of you know that my sister Lizzie has a syndrome called “XP.” Basically, her skin is extremely sensitive to sunlight and uv rays, and her cells aren’t able to repair from UV damage. She needs to stay out of sunlight 100% of the time, or completely cover her skin and wear a protective plastic shield over her face when in the sun. There is no cure, and it’s very, very rare. 1 in 250,000 or something like that.
Because of Anna’s obvious sensitivity to the sun, we have been concerned she might have XP, even with how rare it is. We decided to take her to a local doctor that is familiar with Lizzie and with XP. When we arrived around 1:30, Anna finally opened up her eyes. During the quick visit, the doctor more or less said “Let’s worry about her skin later. I’m really worried about her eyes, and I hope she’s not blind now.” She called an ophthalmologist at a large local children’s hospital and had us run out the door and drive straight there.
As you can guess, it was a horrible drive thinking we may have blinded our child for life. The good doctor at the children’s hospital was able to look at Anna’s eyes and conclude that there was no damage to her eyes or vision from this recent sunburn. THANK GOODNESS. Anna can see just fine, but she is still a little light sensitive and her eyes are still burned, red and puffy. We’re giving her acetaminophen and ibuprofen and she’s feeling more like her normal self as her sunburned eyes heal over the next several days.
Meanwhile, we’re still concerned about the XP possibility. The local doctor is sending photos of Anna’s burns to the National Institute of Health in Washington D.C. where they will examine them. We’re not positive what may happen next, but if they suspect XP we’ll probably need to send in a blood test, or get a DNA sample, or have a geneticist have a look. It could be many months before we know anything.
In the meantime, we’re going to be extra cautious and treat Anna like she does have XP – meaning no sunlight, ever. Thanks to Lizzie, we have knowledge and tools on how to do that. And if Anna does have XP, it will be a miracle to bee able to know at such a young age, and we’ll be able to keep her healthy and happy for a long healthy life. But here’s hoping she’s just really sensitive to the sun.
Since that time we discovered Anna does indeed have XP. I started this blog to help people understand Anna’s condition, to educate people about XP, and hopefully help others who might struggle with XP or something similar. You can read about our trip to the National Institutes of Health on our second blog post here: https://annaliberty.wordpress.com/2012/03/11/the-nih/
Anna Liberty 
[…] 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. […]