I mentioned her in this post.
We finally got answers around 6 weeks ago or so. She was diagnosed with a very rare Finnish heritage mitochondrial disease called GRACILE syndrome. This was not the answer we were hoping for at all. The low down was, most babies diagnosed with this syndrome either pass away within days of birth or around 4 months, even on all meds possible.
Even with the diagnosis Livy was able to go home and be home with her Mommy and Daddy. It was awesome that she was able to spend a month at home.
Livy has THE BIGGEST fan club ever. For someone so small she is sure loved. She is loved by so many people that never even met her even.
Livy very suddenly passed away November 30, 2014 She was 5 months and a few days old.
Here is the beautiful girl.
She was a female version of her Daddy my brother.
Long eyelashes and big dark eyes. She was perfect!
Her funeral was hard, but oh so beautiful. It was amazing to see all those who came from everywhere to show their love for her and her parents. There were co-workers from both Steve and Lindsey. There were family members, friends and even Doctors and Nurses from Seattle Children's. She touched the lives of so many people of all faiths.
She will be forever missed, but forever remembered and loved by all.
1 comment:
Good job. You put it so well. We'll all always love Livy.
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