The inaugural Energy Walk & 5K Syracuse was a huge success!! More than 100 attendees came out to join MitoAction to raise awareness and support for mitochondrial disease.
The event was held in honor of Caroline Payne and hosted by her incredible family!
“Though she be but little, she is fierce”
Caroline Hope Payne was born 8 weeks premature in 2010, weighing only 2 lbs., 4 oz., resulting in a 47 day stay in the NICU. She is a twin and during pregnancy we discovered she had slow Doppler flow, poor growth, and a hole in her heart. The doctors told us that she would not make it, while her sister was thriving. Two days before the twins were born, the sonogram showed that she had reverse Doppler flow, which caused an immediate admission to the hospital. Regardless, Caroline came out shaking a fist and making the doctors laugh!
In her newborn and toddler years, she missed all the typical milestones and wasn’t gaining weight. At 8 months old, she started physical, occupational, and speech therapy. When Caroline was around 3 years old, I noticed a story on Facebook about a girl with mitochondrial disease that had many of the same symptoms that Caroline seemed to have. I asked the pediatrician about mitochondrial disease and she said it wasn’t something we needed to worry about.
Caroline had a brain MRI at 3 years old which came back showing no issues. But, then in January 2016, when Caroline was 5, a new MRI showed a “significant enlargement” in her brain that was diagnosed quickly as “probably a brain tumor.” This was cause for more testing and of course, more panic. Over a period of 3 days, we met with neurologists, oncologists, radiologists and a pediatric neuro surgeon. More and more doctors weighed in and determined that maybe it wasn’t a tumor after all. Our neurologist ordered a series of tests and diagnosed her with a probable metabolic or genetic condition.
After another EEG, MRI, and multiple other tests, we were referred to the Center for Development, Behavior, and Genetics at Upstate University Hospital in February 2016 for an evaluation of a possible mitochondrial disorder.
On March 17, 2016, Caroline was officially diagnosed with mitochondrial disease with 2 mutations (ND-1 and ATP-8), as well as Leber’s Hereditary Optic Neuropathy.
Caroline is now 9 and a half years old and the smallest of 4 girls in our family. However, she likes to point out that she is 1 minute older than her twin sister! She makes friends and impressions everywhere we go. At school, she is often called “The Mayor.” She still receives physical and occupational therapy and deals with a heart condition and poor vision. She tires easily, but she doesn’t let that stop her from living life fiercely! She loves to read and watch cooking shows. She is a cheerleader on a special needs cheer team at an all-star gym.
She continues to meet milestones, but on her own timeline. “Though she be but little” – she is a fighter and continues to persevere! Our “Tiny Liney” as we often call her continues to remind us that now matter her size, she is BIG and so is the impact she continues to make on everyone she meets!