Mike and I stayed up late the other night because we couldn’t stop watching this episode on Dateline about Kid’s diagnosed with a skin condition called XP.
Xeroderma pigmentosum (XP) is a rare autosomal recessive genetic disorder of DNA repair in which the ability to repair damage caused by ultraviolet (UV) light is deficient. In extreme cases like the ones shown on Dateline those kid’s can never go in the sunlight without a specific outfit requiring being fully covered head to toe with a huge shield to guard the face.
We watched in silence. So I’m sure after reading what I just wrote you either said out loud, “Those poor children,” and yes you are right. It’s horrible. One of the amazing things about this particular dateline was that they are working on a possible cure for this disease. One of the other amazing things we learned is that there is a camp designed for these kids to attend so they can spend time with other kid’s with XP.
So after the show had finished, Mike sighed out loud, “We are so lucky.”
I couldn’t sleep. Day’s later, I can’t get it out of my head. Yes, of course, we are lucky in so many ways. Then I thought, but so are they. Don’t get me wrong, it’s horrifying the struggles those kid’s face on a daily basis. I am not in their shoes, and I am not going to speak for them, nor will I speak for anyone else, but I had a moment and thought. Those kid’s are lucky in so many ways as well.
What I learned from that Dateline was how loved they were. How appreciated they were. They were surrounded by people who were fighting for them and loved them.
Don’t we all wish we all were surrounded by people like that? I certainly do. I hope they someday I will turn on my television to Dateline and see a special episode on PKU and that they indeed had found a cure. That would be remarkable. A dream come true.
A world with no more blood tests for my daughter, no special diet for her, she can go anywhere and eat anything she wants. But no that’s not our reality and that is fine. We will fight for her, and love her, and make sure she is surrounded by people who love her and advocate for her every day.
We all have struggles in life, they come in all shapes in sizes. Some show up sooner than others. But rest assured that Frankie will always be taken care of. And I have a good feeling those kids with XP will always be loved and taken care of as well.