Malachi was diagnosed with SURF1 Leigh's at 2 weeks old because his big sister Evangeline was diagnosed when I was pregnant with him. He is now 20 months old and we have been able to avoid any major regressions.  He still doesn't walk and he uses a gtube to meet his nutritional goals, but he is a bundle of energy. He loves throwing balls, playing pretend tea with mommy and sister, and aggressively giving kisses to anyone who thinks it's funny. He loves to laugh and sing and is one of the most observant little kids I've even met. We fight everyday to keep him healthy enough to be able to enjoy being a toddler. Watching him slowly lose energy and balance is torture, but there is finally hope for a cure with UT southwestern and this trial.

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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.

501(c)3:EIN: 82-4665767 


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