Faith Marie Joseph was born on August 11, 2012 to Falanda and Joe Joseph. She was a typical babbling baby and spirited toddler, but things started to change when Faith turned three. Out of the blue Faith’s eyes started to droop and the family consulted her pediatrician. After several visits to the doctor, the official diagnosis was allergies, but a mother’s intuition told Falanda it was something more.
A second opinion from a new pediatrician had a different outcome. Faith was found to have neurological symptoms and was scheduled for magnetic resonance imaging (MRI) where they found multiple lesions on her brain. From there, Faith and her family underwent genetic testing and the diagnosis was confirmed. Faith Marie had Leigh syndrome, a pediatric-onset, progressive and fatal neurological disease closely linked to Parkinson's Disease.
Unfortunately, Faith’s condition started to spiral. She was in and out of the hospital and lost her ability to talk and eventually to walk. While some doctors told the Joseph family to take her home and make her comfortable, Falanda and Joe were determined to fight for their baby.
The Joseph family eventually found their way to Dr. Mary Kay Koenig, MD, medical director of the UTHealth Mitochondrial Center of Excellence. Dr. Koenig gave them hope and a path to follow to improve Faith’s quality of life.
Today, Faith is 9 and just started fourth grade. She goes to school and rides the bus, much to her delight. She loves singing and dancing and listening to music. As far as her health, she sees a team of doctors who monitors and manages her symptoms. She takes the “mito cocktail,” a combination of vitamins, cofactors, and nutrients known to improve the function of mitochondria, as well as Vitamin D and hypertension medicine. And, the Joseph family is happy to report she’s had no hospital stays in two years.
When asked what she would tell others embarking on this or any difficult journey, Falanda, who is writing a book titled “The True Story About Faith,” says “I want parents and caregivers to know it gets easier, to trust the process and to gather strength from others. Lean on loved ones, show kindness and remember it just takes one word, one small action to make a difference in someone’s day – yours included.”