Join us this September at Green Lakes State Park to help us to raise awareness and funds for mito one step at a time!
2024 Energy Walk and 5K – Syracuse, New York
Sunday, September 15, 2024
Green Lakes State Park, Fayetteville, NY
Gather your team and get ready to go for a walk all together while raising awareness for mitochondrialRelated to the mitochondria. disease! Whether you walk as an individual, create a team or volunteer, you’re making a difference in the lives of patients and families who rely on us. Your fundraising helps MitoAction change the future of health for every mito patient, here and around the world.
This family event offers support, friendship, and fun for everyone! The day’s highlights include:
• Musical entertainment
• Food & Refreshments
• Unique raffle items
• Kids’ arts & crafts
• Sponsor activities
• Team & individual awards
• And so much more!
Register, fundraise and JOIN US!
Energy Walk Schedule
The fun starts at 9:00am with raffles opening up and DJ Jammin’ Beats spinning the party music! Also, at this time, we begin the giveaways from our generous donors, while supplies last.
You will also be able to view mito facts and patient stories throughout the day. Shortly after 9:00 am the carnival-like games will open up for fun and the chance at prizes (Games will continue as long as we still have prizes left, players left, or volunteers to run them!)
At 9:30am and continuing until 11:30am, we welcome The Face Paint Lady, FPL Entertainment for face painting, glitter tattoos, and twisted balloon creations.
At 10:00am, the run will start, followed shortly thereafter by the walk. The run and walk take place on the trails around Green Lakes, and will be marked for the 5k run, or the shorter path, but whatever you want to complete, if any, is up to you!
The fun continues at 11:00am with Mega Bubble Man Productions and a special visit from our friend Otto Orange.
At 12:00 pm, we will close down the raffles and begin the process of drawing the winners and Spartan Sound Machine performs.
Meet Caroline
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 mutationsgenetic variant, genetic change (ND-1 and ATP-8), as well as Leber’s Hereditary Optic Neuropathy.
Caroline is now 10 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 therapyTreatments aimed at helping someone complete certain daily tasks of daily living 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.
Thank You Sponsors and Donors!
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