2026 Syracuse Energy Walk

"Though she be but little, she is fierce"

Caroline Hope Payne was born 8 weeks premature in 2010, weighing only 2lbs, 9oz, resulting in a 47 day stay in the NICU. She is a twin and during pregnancy we discovered she had slow Doppler flow, low amniotic fluid, poor growth, and a hole in her heart. In her newborn and toddler years, she missed all the typical milestones and wasn't gaining weight. At 8 month 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 mito 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, however, it was performed without dye contrast. But, then in January 2016, when she was 5 years old, 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 pediactric neuro surgeon. More and more doctors weighed in to determine that maybe it wasn't a tumor after all.

After another MRI, EEG, and multple other tests, we were reffered to the Center for Development, Behavior, and Genetics at Upstate University Hospital in February 2017 for an evaluation of a possible mitochondrial disorder. On March 17, 2016, Caroline was officially diagnosed with mito disease with 2 mutations (ND-1 and ATP-8), as well as Leber's Hereditary Optic Neurology.

Caroline is now 15 years old and the smallest of 4 kids in our family and very small for her age. However, she likes to point out that she is 1 minute older than her twin! She makes friends and impressions everywhere we go. She still works on physical, occupational and speech therapy and suffers from poor growth, small stature, a heart condition called Wolfe-Parkinson-White Syndrome, vision problems, dysautonomia, Leber's Hereditary Optic Neurology, optic nerve atrophy and palor, Spastic Diplegia, ADHD, OCD, cerebral atrophy and encephalomalacia. In January of 2020, Caroline had a cardiac ablation at the Cleveland Clinic and create an online movement of supporters who wore green the day of her procedure. In October 2021, Caroline and her family received a wish trip to Give Kids the World Village granted by the Dream Factory of CNY.

She tires easily, and faces many challenges, but that doesn't stop her! She loves to read and watch cooking shows.  Caroline is a cheerleader on a special needs CheerAbilities All Star team and has competed in the local Special Olympics and Onodaga Country Olympiad! She continues to meet milestones, but on her own timeline. She grows slowly and on her own curve. "Though she be but little, she is fierce." - she is a fighter and continue to persevere! Our "Tiny Liney," as we often call her, continues to remind us that no matter her size, she is BIG and so is the impact she continues to make on everyone she meets!

For over 20 years, MitoAction has been transforming the lives of families affected by mitochondrial disease. MitoAction's mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiative, and by granting wishes for children affected by mitochondrial disease. We strive to make a measurable impact in the lives of those who are affected by mitochondrial disease.

Committed to making the largest impact possible, MitoAction serves individuals in the US and around the world. All of our programs and services are free of charge. The programs and services MitoAction provides continue to be a lifeline for families impacted by mito. Families know with MitoAction, they will never be alone on this difficult journey.