This is a synopsis of the Grace IKenitz Mitochondria Disease episode on “I Beat the Odds” on the Zliving Channel.
Grace Kenitz was born on March 6, 1999. When her mother, Shannon, tried to feed her Grace was unresponsive to anything. Shannon worried about her eyesight so she took her to an optometrist. The optometrist thought that Grace was having seizures and suggested that Grace be taken to a hospital immediately.
Grace was hospitalized and diagnosed as having West Syndrome. In the next month, Grace had liver test, bone marrow procedures, many blood tests, and numerous muscle biopsies. Finally she was given a brain biopsy.
The muscle biopsy showed that she had mitochondrial cytochrome C reductase Deficiency. It is a rare and deadly abnormality of the mitochondria which left Grace blind, unable to eat, and unable to walk.
Shannon was told by the doctors that they couldn’t do anything more of Grace. She was told to take Grace home and made her as comfortable as possible until she passed away.
Shannon refused to accept that diagnosis and began searching for an alternative way to save her daughter. A group called Moms United for Moral Support suggested that Shannon try a hyperbolic treatment She checked with her doctors and they said it would not work.
With nothing to lose, Shannon decide to try the hyperbolic treatment. Since it was very expensive, she appealed to her church and raised enough money for one month or 40 treatments.
A doctor was found in Florida who would perform the treatment. He was the only one in the United states that Shannon could find. When Grace arrived in Florida, she was in desperate condition and they would not sure that the treatment could help.
After about 10 treatments, Grace was able to move her fingers and was trying to lift her head. Shannon raised more money to continue the treatments for several more months. Grace continued to improve. Then, after 4 months of therapy, Grace was at a restaurant and reached for a plate, grabbed it, and dropped it.
She could see, she could move, and she could eat. Shannon found an investor who built a clinic in Wisconsin for Grace. The clinic is called, “A Place of Grace”. Now, Grace and her mother would not have to travel and could get the hyperbolic treatments in their home town.
Grace was well enough to go to kindergarten. Her story was news. While Shannon and Grace were being interviewed on TV, Grace reached up and touched her mother’s check and said, Mama. The first time she had spoken. Later, she started to walk ;unassisted.
Shannon contacted Dr. Dan Rossignol who was a proponent of hyperbolic therapy for neurological patients. He removed gluten and casein from her diet. He also added supplements ot help her absorb vitamin B6.
Then Grace started to walk ;unassisted. She wasn’t expected to live past 3 years of age. Now she could see, talk, eat, and walk without any help.
At age,10, she is continuing to improve and it is hoped that she will be able to live a normal life.
