When people learn about XP, one of the questions we get is “Are you guys going to have any more kids?” They wonder if we’d want to risk having another child with XP. We even had one doctor advise us to not have any more children. That one shocked us here in big-Mormon-family country.
I wonder if people realize the subtext of what they are asking. It’s almost like asking if we’d have Anna over again if we could. The answer is, in the most loving way possible, “OF COURSE, YOU IDIOT!!” Anna is an amazing girl who will live a long and wonderful life safe from UV radiation. And any brothers or sisters that come along, whether they have XP or not, will be welcomed into our family with love and gratitude.
The fact is, Anna’s little sister has a 25% chance of inheriting XP. (For you non-math majors out there, that means she has a 75% chance of NOT having XP.)
When Libby and I have discussed it, we sometimes think it would be easier if Anna’s little sister has XP. We already know how to take care of her, and it might be easier emotionally for both of them if they have to live by the same set of rules when it comes to sun exposure. On the other hand, we wouldn’t wish XP on anyone, so we would prefer that she does not have this rare, life-altering skin condition.
When it comes down to it, we are excited to have another gift from God join our family. I’m incredibly blessed to have a loving wife, a extra-special daughter, and another on the way.
Anna Liberty 
Beautifully put gys! I was 15 weeks pregnant with Raife when Eddison was diagnosed but even then I could feel people judging us when the asked bout the prospects of our unborn baby! We had a fantastcially peacfull dark labour with only a safe lamp in the corner of the room, and our hospital were amazing in providing a totally blacked out room for me and baby after delivery. After 3 tense days waiting at home for the results from the cord blood we were thrilled to learn that whilst he is also a carried like us, he doesnt have the XP Gene.
Boths boys are a complete blessing to us, and I know your new baby girl, will, no matter the outcome be as equaly special and joyous for you as precious Anna.
Congratulations guys, enjoy the pregnancy and Anna getting to know baby bump!
Lots of Love
Miller Family x x
Thanks for your comment! I’m glad that Raife’s birth was so well handled for you. We are glad to have connections with great families like yours!
[…] if Jayne has XP like Anna. Jayne has a 75% chance of NOT having XP, and a 25% chance of having it. I posted our thoughts about this a few months ago. If she does have it – I might need to change the name of this blog! Either […]