This Monday, December 10th from noon through 2:00 pm, Congresswoman Ileana Ros-Lehtinen (R-FL) will join doctors from Columbia Medical Center in a special luncheon to raise awareness and help find a cure for Mitochondrial TK2 Depletion, a rare genetic disorder that weakens a person’s muscles and for which there is currently no cure nor treatment.
My friend, Art Estopinan, and his wife Olga Fleites Estopinan, are facing every parent’s nightmare as their young son, Art Jr., was diagnosed with this disease. Art Jr., is a precocious and beautiful baby but his young life is threatened by this horrid affliction, as are the lives of countless children suffering from this disease. Art and Olga want to make sure that no other parent has to suffer the daily horror they are facing battling Mitochondrial TK2 Depletion and they are asking Ileana to join with the doctors from Columbia for a special luncheon to raise awareness and help find a cure for this disease.
This special event will take place from 12:30 noon through 2:00 pm at the Ritz Carlton, Coconut Grove, located at 3300 SW 27 Avenue, Miami. Media is encouraged to attend and spread the word on helping to find a cure for this disease as the doctors from Columbia Medical Center will have a presentation on the disease and current research being done.
Said Ros-Lehtinen, “My heart aches for Art and Olga as they spend countless sleepless nights desperately searching the internet and any other resource looking for a way to help their little boy. The great doctors at Columbia have been doing promising research to find a cure for Mitochondrial TK2 Depletion and I am honored to lend whatever help I can to this worthy endeavor. No parent should have to go through what Art and Olga are going through and this is the foundation of all of our efforts in this race to find a cure for this terrible affliction.”
Art commented that “Olga and I are truly grateful to Congresswoman Ros-Lehtinen for helping us bring the community together in a non political way to support such a worthy cause. As always, Ileana was eager to help us and we are forever indebted to her for her kindness. This clinical trial at Columbia University Medical Center is the only hope that our baby boy has for survival due to the aggressive progression of this horrible disease which is fatal at age three. Our baby is in a daily fight for his life and he gives Olga and me the strength to continue fighting for him. This clinical trial is vital to Arturito’s survival. We are so appreciative of the support from our community that words cannot express how we have been touched by the generosity all have shown. No other parents should go through this living nightmare and that is why I’m asking for help from our community. Thank you.”