Katie Parsons, a 6th Grader Working to Fund the Cures for Mitochondrial Disease!
Meet Katie Parsons, an engaging 11-year-old girl from Marietta, Ga. Katie is an outgoing, happy 6th-grader that loves riding and jumping horses. She has also recently started as a percussionist. Katie is also very excited to earn her babysitter and CPR certificate because she loves taking care of others, especially little kids. In many regards, Katie is just like her classmates, except that she has mitochondrial disease.
Katie was born healthy at 7 pounds 11 ounces. Her health was fine her first few weeks, but then she started having issues with reflux. At 6 weeks, she saw her first specialist – a gastroenterologist. As the reflux worsened she began to not eat and she developed torticollis and plagiocephaly. Even at this early age, she knew that eating caused her pain, so she had to have an NG tube to help her from losing further weight. This was just the beginning of many ER visits and hospitalizations.
It was not until an ER visit where her blood sugar was in the 30s that Katie’s parents began to get the feeling that something was very wrong. Katie began crying from excruciating pains in her legs and began falling. The family began a journey with specialists included endocrinologists, geneticists, allergists and nutritionists. Katie was hospitalized many times due to illness, blood sugar fluctuations and respiratory issues. Her parents were scared and felt helpless knowing something was wrong, yet they still had not received a concrete diagnosis.
Katie’s parents took her to Dr. John Sladky, a neurologist who conducted an EMG and confirmed Katie’s myopathy. Dr. Sladky was the first specialist to mention mitochondrial disease. From that appointment, Katie went to Dr. John Shoffner, a leading mitochondrial expert and researcher. A muscle biopsy with Dr. Shoffner confirmed Katie’s mitochondrial disease, Complex 1 and 3. After starting a regimen of medications, her symptoms started to improve.
Through the next several years, Katie’s condition has constantly evolved through highs and lows. Additional medications help make dramatic improvements, and then other health issues develop, such as cerebral folate deficiency, asthma, lactic acidosis and migraines. Through it all, Katie has stayed strong and positive. Even though from the outside she looks like nothing can be wrong, on the inside there isn’t enough energy to keep everything running they way it’s supposed to run.
Katie is now a young philanthropist and raises funds for the Foundation for Mitochondrial Medicine. She began making earrings, bookmarks, wallets, drink koozies and other items from duct tape and started Katie’s Duck Tape Kreations. She sells her items and donates a portion back to the Foundation. She also recently held a snow cone sale at her school to raise additional money. Katie sold 139 sno cones for FMM!
This past July, Katie was selected to call out the official “play ball” just before the first pitch at the Atlanta Braves game and represented the Foundation for Mitochondrial Medicine at the Foundation’s first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren.
Earlier this fall, Katie was recognized 11 Alive’s Random Acts of Kindness and honored as FMM’s first Firefly Friend.
Katie is a shining example that one person can make a difference, no matter their age. The Foundation can’t wait to see what the future holds for this creative and enthusiastic girl!
Hope Flies with the Braves
On July 28, 2013, the Foundation for Mitochondrial Medicine held their first annual Hope Flies with the Braves Families Day at Turner Field. More than 70 Braves fans came out before the game to meet FMM Ambassador Colby Wren and Atlanta Braves General Manager Frank Wren. The FMM staff and volunteers welcomed all the families, and everyone enjoyed making connections with old and new friends and sporting their Hope Flies Athlete t-shirts and Hope Flies temporary tattoos.
After the pre-game festivities, the group headed to their seats to cheer on the Braves. Marietta resident Katie Parsons was selected from the Hope Flies with the Braves attendees to call out the official “play ball” just before the first pitch and represented the Foundation for Mitochondrial Medicine! Katie, age 11, has complex 1 and 3 mitochondrial disease among other medical issues. She is a bright and happy girl and was delighted to make the “play ball” call and was excited about being featured on the Braves jumbotron screen.
To view more pictures from this year’s Hope Flies with the Braves, click here.
Stay connected with FMM to hear more about Hope Flies with the Braves and other Hope Flies events!