Jaxson Flynt was diagnosed with a terminal mitochondrial disease known as Leigh syndrome on October 30, 2014. Leigh syndrome is a rare genetic disorder characterized by progressive damage to the central nervous system. It is caused by a defect in the function of mitochondria within the cells of the body. Jaxson is a happy boy who loves to play basketball and spend time with his mom (Lindsey), dad (Garret), sister (Madison, 16) and two labradoodles (Remy and Reese).
He is non-verbal, has limited vision and fine motor skills and receives his nutrition through a g-button. However, Jaxson has met many milestones the doctors thought would be impossible. They thought he would never walk, and he can get around with the best of them.
Our goal is to slow the progression of this disease while working towards a cure for Jaxson and future generations. Gene therapy looks to be a promising life extending treatment for Leigh Syndrome (C12orf65). The field of gene therapy has gone through remarkable breakthroughs these last few years and offers incredible promise for rare genetic diseases such as C12orf65 Leigh Syndrome.
We are fortunate to partner with Dr. Mario Saporta and Dr. Steve Gray who have years of experience in this field and are at the forefront of gene therapy research. Our expectation is that this research project will lead to an FDA approved clinical trial, which would ultimately lead to a treatment and a cure for this devastating disease.
Jaxson’s Clay Shoot 6/20
Thank you to everyone who attended this family-friendly event with live music, face-painting, a bounce house, a kid-safe shooting game, and plenty of kid-friendly activities!
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