Last year, we were lucky enough to take Anna with us on a trip to Washington, DC. Because we were invited to participate in the National Institute of Health’s study on XP (which is right outside of DC in Bethesda, MD) and because Libby had never been to DC, we decided to extend our trip a few days. We looked forward to seeing the sites in our nation’s capitol.
We were a bit worried about how to visit all the places in DC while keeping Anna safe. Many of the monuments and other sites are outdoors. Having a genetic condition like Anna’s disease makes trips a little more complicated.
Our immediate thought was to outfit a stroller with a big plastic sheild, protecting Anna from the sun and giving her a pretty good view out, as well. With velcro and clever measuring and cutting by Anna’s grandpa Boyd, a great cover was made. You can see that it worked pretty well!
Knowing that August in DC can be extremely hot an humid, we were worried that Anna would basically be sitting in a little sauna each day. We didn’t want her to be cooked every time we went out with the stroller.
To solve this problem, we bought one of those little portable fans with a built in water bottle. We cut a hold through a little window on top of the stroller just big enough for the fan to fit through. We were able to spray it once in a while and keep the fan on to move the air around insider her little bubble.
I think it worked pretty well! In fact, we’ve continued to use the stroller often since that first trip. Now we’re thinking about maybe using the UV blocking plastic to cover a bike trailer. We are very grateful to the XP Family Support Group for providing us with the plastic to keep Anna safe from the sun.