Approximately 5 years ago, I received a phone call from Andre Ducote, a communicant at my former parish, St. Columb’s in Ridgeland, Mississippi. While I was no longer rector of St. Columb’s, Andre reached out to me to tell me that he and his wife’s, Elizabeth’s, then 9 year old daughter, Caroline, had been diagnosed with a disease known as Leigh Syndrome. As I became aware, Leigh Syndrome is a rare, degenerative, neuromuscular disease caused by a genetic mutation which adversely affects mitochondrial function. In simplest terms, cell’s mitochondria in a person with Leigh Syndrome do not convert food to energy in amount needed by the body to grow, develop and function. The disease typically affects the organs of the body which use the most energy – brain, heart, eyes and muscles. In some children, the mitochondria do not function at all or at such a poor rate that the prognosis is very poor. When we spoke those many years ago, Andre informed me that in Caroline’s case, the SURF1 gene (vital in energy production) mutated. Fortunately, in Caroline her mitochondria function to a certain level, although not sufficient enough to fully fuel her body resulting in an energy depletion or “brown out,” for lack of a better term.
When we spoke that first time about Caroline’s Leigh Syndrome, Andre expressed to me the devastation that he and his wife felt upon learning the diagnosis . He explained to me that Leigh Syndrome is degenerative and that there is no cure. The only treatment is dietary and vitamin supplements with the hope of slowing the progression of the disease.
Outside of the casual inquiry, Andre and I did not speak about Caroline or her condition until October of 2018 when Andre contacted me with a simple text message “need to talk with you about Caroline.” As you may imagine, fear of the worst kind entered my mind. Andre quickly relieved the tension and clarified that it is good news. When we met a few weeks later, Andre discussed with me that there is ongoing research to cure Leigh Syndrome. While routinely searching the internet, Elizabeth discovered a website, www.curesurf1.com. CureSURF1 is a grass roots, non-profit foundation dedicated to raising money to fund ongoing research at UT Southwestern Hospital in Dallas, Texas concerning SURF1 Leigh Syndrome. The goal of the research is a human clinical trial of gene replacement therapy and, if successful, a cure for all of those afflicted with this horrible childhood disease, including Caroline. The trial, which entails initial research, a toxicology study and a human test group study will cost an estimated $3.3 million dollars. This year and in approximately six months, over $500,000 has been raised towards this goal.
The founders of CureSURF1 are parents of SURF1 Leigh Syndrome Children. As the disease is so rare, it does not receive the attention of the national media or, most importantly, the corporations and pharmaceutical companies which fund research such as that ongoing at UT Southwestern. Since discovering the possibility of a cure in October of 2018, Andre and Elizabeth have joined hands with the other families with Leigh Syndrome children. Caroline is a featured child on the CureSURF1 website and the Ducotes have been engaged in spreading awareness of the disease, the ongoing research for a cure and need for fundraising.
I invite you to go to www.curesurf1.org and learn about Surf1 Leigh Syndrome, the children, the clinical trial and, if you are able, donate to this worthy cause. I have been informed that all donated funds go directly to UT Southwestern Medical Center and are applied to the cost of the ongoing research.
If you would like more information, please do not hesitate to contact Andre or Elizabeth at the following email addresses and telephone numbers:
In addition, you may “friend” either one of them on Facebook as we they be sharing information about upcoming fundraising events and research progress on that social media ap. Simply search for their names.
Hope is powerful. Andre and Elizabeth have gone from living life with Caroline one day at a time, to realizing that cure is at hand.
Praying for God’s blessing and protection for all, for the knowledge and skill to cure all diseases and with deepest appreciation,