ENERGY IN ACTION – EPISODE 045
Live Life, Dream Big, Be Positive
Stacy and Ari Goldberg share the story of their Mito Warrior. Rina lived an authentic be-positive life. She faced multiple medical challenges with resiliency and left a legacy of an award-winning film, The Magic Bracelet.
EPISODE HIGHLIGHTS
Can you tell us about Rina’s mito journey?
Rina had medical difficulties from the time she was born. She experienced fevers, overheating, developmental delays, low muscle tone, difficulty walking and other symptoms. She was diagnosed with mitochondrialRelated to the mitochondria. disease in 2004. Shortly after, she suffered a metabolic stroke and she was given a nasogastric (NG) tube and feeding tube. Rina’s blood pressure and heart rate required monitoring and caused her to be hospitalized several times. A jejunostomy tube, also called a J-tube, was placed to help her get constant fluids. Just after that, she had a portA device for delivering liquid nutrition or treatments into the circulatory system, consisting of a small receiving chamber implanted under skin of the chest, connected to a narrow tube that empties i inserted to have IV fluids running 24/7 so she could live at home. In 2009, Rina suddenly couldn’t walk after an infection in her legs. Despite treatment, Rina never walked independently again. We began a downhill journey of serious crises. A few months later, Rina’s night nurse wasn’t able to control her breathing and she was admitted to the hospital. Her treatment included being on a ventilator, which later required a trach tube and constant use of the ventilator to breathe.
What is your advice for new parents on a diagnosis journey who want to advocate for their child?
Every doctor is not an expert on every medical issue, so if you feel like a doctor isn’t acknowledging a concern, find another physician. When finding a doctor and building your medical team, follow your gut and look for those who are open to listening and who are parent and child driven.
Can you share about The Magic Bracelet?
Rina was very creative, and with the help of a family friend, she took an interest in coming up with a film concept to bring attention to mitochondrial disease. She wanted to spread awareness through a fun and witty film. Medical truth and authenticity was important to convey in the film, but despite mitochondrial disease not having a cure, the film doesn’t have a sad ending. Rina went on hospice in September 2010 and she asked me to promise to take care of her film and get it to Hollywood. The Make a Film Foundation took Rina’s film on as a project and in December 2012, The Magic Bracelet, was produced in Hollywood.
