Tuesday, November 15, 2011

Genetic results from London

The geneticists and researchers in London called our doctors last week to tell us the results of the blood work that we sent off to them. Lila does indeed have the mutation that they believe is responsible for Vici Syndrome. It is our first abnormality in all of the genetic work up that we have done. They also found in our blood where Quinn and I are carriers. It all will become much more official once they publish, but as our neurologist told me this just makes him 99.9 percent sure its Vici instead of 99 percent.
This is so bittersweet for me. I guess its the end of our searching, and it does give us hope that future children are possible through IFV and genetic screening yet it means that my sweet little girl will not be with us for very long. I truly can't imagine being without her. The only silver lining for Lila is (and I wont even try to explain because frankly I really don't even understand it myself) they can tell, by the type of mutation, that she is on the less severe side of Vici. Hopefully this means we will have her longer than most and that she will accomplish more than most Vici children.

5 comments:

Laura said...
This comment has been removed by the author.
Laura said...

I posted and it came out weird. What I wanted to say was how amazing you all are and what a great teacher that little Lila is. Love you!

Barb @ getupandplay said...

Sometimes words fail me, but I will try anyway. I'm so sorry that Vici is the final word. I just pray that the Lord will give you a lot more time with Lila. And I know you cherish every moment with your special, incredible, light-filled daughter.

nikki said...

It's true, the ages they throw out there are only based on what little they know. Here is to Miss Lila beating the odds! These kiddos are so resilient.

We would love to get together with you guys. Maybe after Thanksgiving?

w and w said...

Kris...I want to send you the biggest hug in the world from NC. You and Quinn are amazing. Clearly Lila is amazing. I'm speechless really, I just want you to feel my love and complete admiration for you all. The video below is beautiful. I was bawling after about 20 seconds. The Lord will carry you through this, He will. I just pray I do my part in being there for you. So sorry I'm not there. so so sorry. I really just want to hug you right now.