Evangeline is a sweet 3 1/2 year old. She was born right on her due date with no complications and for the first 8 months hit all of her milestones and then some. We were certain she was going to be an early walker because of how strong she was. Things started to change when she began vomitting most food and stopped gaining any weight. All of her development slowed, but we thought that was just because of GERD. When she was 11 months old she got a virus and ended up having to spend 2 weeks in the hospital, she stopped crawling and could barely hold her head up. It wasn't for another 7 months that we got her diagnosis of SURF1 Leigh's. For the next year she continued to hit her own milestones and gained back much of what was lost. She crawled and cruised on furniture and climbed up the stairs.  She also learned many words in sign language and loved finding ways to communicate. We call her our little extrovert baby because she has always loved being out and talking to people! At the beginning of December 2017, Lina went back to the hospital for a cough she couldn't quite kick. She ended up having to have a breathing tube because she couldn't maintain proper oxygen.  Two days before Christmas, she was looking good enough to take the breathing tube out, but within minutes of extubation she went into cardiac arrest. Lina was without a pulse for 12 minutes. We know she is still fighting everyday to move and smile and get her chance to be a little girl. 

This New Year's eve 2018, she smiled for the first time in a year and we continue to hope that more and more of her tender, bubbly personality will shine through and that we can find a cure in time to save her.

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Our mission is to fund SURF1 gene therapy research at UT Southwestern Medical Center in Dallas, Texas.  The field of gene therapy has gone through remarkable breakthroughs these last few years and offers incredible promise for genetic diseases such as SURF1 Leigh syndrome.

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