Home sweet home. It was finally our turn to sit on the couch all day and love on our baby like most new parents get to do. We could not cuddle her enough. We also became professional "googlers" trying to learn as much as we possibly could about this rare disease and how to raise a blind child. Considering no one in either of our families is blind or has had any vision issues for that matter, we were in serious denial that this could be hereditary. For family planning purposes, we had our blood drawn, and Michael's dad was gracious enough to run our bloodwork through his labs in Phoenix. Family, co-workers of Michael, and complete strangers were working and researching around the clock for us. We don't take this for granted and cannot say thank you enough.

I'd go into detail about everything I've learned about genes and mutations except I still get confused--and Michael has explained it probably 100 times to me. Let's be real, I was born to be a mom, so I'm good at---well, mom things. To dumb it down (because this is the only way I know how to explain it), Presley has an autosomal recessive LRP5 mutation; meaning she got one from Michael and one from me. The perfect storm. This is extremely rare. Michael and I just happened to find each other & both be carriers of two different mutations on the same gene and both pass it down to our precious baby. Because it is recessive (meaning Michael & I aren't showing any signs of FEVR), we both have to pass it down for it to effect our kids, and the severity can vary. This means there is a 25% chance any future kids could also be impacted. Michael and I both received a good gene from either our mom or dad so our bodies naturally chose the good. In Presley's case, she received both of our bad copies which resulted in FEVR.

Are we actually related somehow and didn't know it? We've been told we look like siblings and have very similar personalities so I've joked about this a time or two. Don't worry, we aren't from Arkansas. We're just the one in a (two) million.