Timothy is a 5 year old little boy who is full of personality, joy and determination. Timothy and his 6 year old brother were placed with us as a foster placement when Timothy was just 5 months old. We knew right away that he had some developmental delays, but attributed them to the neglect and drug exposure he had already experienced in his short life. 

As he continued to miss milestones and develop more symptoms, we began to suspect there was something a little more serious going on and we began to seek answers. We finalized Timothy’s adoption in 2015 and later that year we received the horrific diagnosis of Leigh’s. Never in a million years could we have been prepared for such a diagnosis. Timothy showed us early on that he was a fighter and we were determined to fight with him and for him every step of the way. In the spring of 2016, Timothy had a metabolic crisis that landed him in the PICU on a ventilator.  It was then that he proved to us just how much of a fighter he is. Despite being told he would not make it, and if he did he would have no quality of life, Timothy defied the odds and continues to amaze everyone around him. 

Timothy has a smile that is contagious and a determination like we’ve never seen before. He has a personality that will melt your heart and he doesn’t let anything hold him back. Timothy is determined to face every challenge head on and we are determined to help find a treatment or cure for him as well as all the other children facing this horrific disease. Timothy along with all the other children fighting this disease, deserves a chance.

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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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