Posted: Oct 23, 2013 6:40 PM by Kathy Kuretich
Updated: Oct 24, 2013 12:03 AM
Earlier this month, a 14 month-old San Luis Obispo girl died from a rare genetic disorder.
Adriana Whitacre was a triplet, and put up a very tough fight.
She was only one of four people in California to be diagnosed with Koolen DeVries Syndrome.
The syndrome is characterized as a missing segment of a chromosome.
Since November of 2012, Adriana was in the hospital eight times. She needed a feeding tube, and had a tracheotomy. Though she suffered many illness during her young life, her mom Somer said she never stopped smiling. She was happy and tough through it all.
On October 6th, Adriana passed away peacefully in her sleep. Somer said her body just gave out after a long fight.
"Fearless. She had so much courage. We had so much hope for her. And through the nicu (neonatal intensive care unit) and through the picu (pediatric intensive care unit) she still smiled. She was absolutely beautiful."
Adriana was a triplet. Her brothers Alejandro and Santiago also suffered from twin to twin transfusion - a complication of disproportionate blood supply.
Now, the boys are healthy and happy.
A fund has been set up at Coast Hills Federal Credit Union to help the family with medical expenses and burial costs. Somer had to quit her full time job and stay home with Adriana full time. Her husband now works two jobs to try and make ends meet.
Somer said she appreciates everything the community has done for their family, and loves to read the well-wishes on Adriana's Facebook page.
Somer hopes to bring more attention to genetic disorders by telling Adriana's story, and her legacy will live on.
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