TRANSCRIPT – The ‘Tiny but Mighty’ Caroline Payne
Moira Vaughan: If you know a few things about Caroline Payne, it’s that she is always laughing, she loves to be a cheerleader, and she’s got a knack for numbers.
Caroline Payne: I guess math is just like, sort of easy for me I guess.
Vaughan: Constantly wearing her pink sparkly shoes, she leaves brightness in everyone’s lives.
Cassidy Calkins: Caroline is our spirit and our excitement. She leaves everyone with a smile on their faces.
Rhonda Payne: She was always the big personality in the room, so she might be a tiny little thing, but you knew she was there.
Vaughan: Caroline’s brightness shines just as bright in school, even if her day-to-day might look a little bit different.
Caroline: It’s hard for me to see things that most people can.
Vaughan: Living with mitochondrial disease, a condition that depletes Caroline’s energy, and always re-explaining it to her classmates can be tiring.
Caroline: People tell me to go faster, and I say I can’t go that fast.
Vaughan: In science, it’s taught that the mitochondria is the powerhouse of the cell.
Rhonda: It’s more than just a little slogan – it’s the powerhouse of the cell. It really creates the energy your body needs.
Vaughan: But — if your mitochondria cells don’t work correctly, your body can have a harder time developing due to a lack of energy.
Rhonda: Caroline was born prematurely.
Caroline: Is that me?
Rhonda: That’s you. Even your baby preemie hat was too big for you.
Caroline: What the heck!
Rhonda: Until she was five years old, we didn’t have any diagnosis. There were just all kinds of medical problems.
Vaughan: The Paynes saw slow growth and a hole in Caroline’s heart when she was born, but not in her twin.
Rhonda: When she was born, she was 2 pounds and nine ounces. People were afraid to hold her.
Vaughan: After five years of testing, the doctors diagnosed Caroline with mitochondrial disease. Mitochondrial symptoms look different for every person.
Rhonda: They don’t look the same, sound the same, act the same; just because I may have this, somebody else may have it, and our symptoms could be completely different.
Vaughan: According to the United Mitochondrial Disease Foundation, every thirty minutes, a child is born who will develop a mitochondrial disease by the age of ten. Caroline’s mom and dad realized early – if they wanted to bring attention to this condition, they’d have to find an awareness group close by.
Rhonda: What’s around here? What can we do around here?
Vaughan: So, Rhonda called the national nonprofit for mitochondrial disease, Mito Action.
Rhonda: I got a call and they said, “Start something.”
Vaughan: What started out as an idea for Caroline turned into an annual race on mitochondrial awareness week — that’s the last week of September.
Caroline: It’s kinda crazy like seeing just how many people came to see me.
Vaughan: $55,000 – that’s how much the race has raised over seven years for families in Central New York impacted by mitochondrial disease.
Rhonda: It was also very emotional and overwhelming to see that kind of support for something that people didn’t even know anything about.
Vaughan: Mitochondrial disease affects 1 in 4,000 kids every year – and while there is no cure yet, the FDA recently approved its first-ever therapy for barths syndrome – a subtype of mitochondria that affects young boys’ hearts
Kira Mann: If one person understands mitochondrial disease a little better, then we’re moving forward, so we keep pushing, we keep trying, and even though we have this therapy approved, we have a lot of work to do.
Vaughan: Caroline’s nickname for her family and older sister Lauren is Tiny Liney for a reason.
Lauren Payne: She’s almost 15, and she doesn’t look like it, but she doesn’t let that stop her.
Vaughan: She may be small in size, but not in her fight for a cure.
Lauren Payne: I think if there is anything we can learn from her, it’s not to let anything hold you back.
Vaughan: With a family of six that’s filled with love, and a community to uplift her, Caroline doesn’t let mitochondrial disease define her personality or her ability to light up every room. In DeWitt, New York, Moira Vaughan, NCC News.
SYRACUSE, N.Y. (NCC News) —If you know a few things about Caroline Payne, it’s that she is always laughing, she loves to be a cheerleader, and she’s got crazy strong skills when it comes to math class.
“Math was always just kind of easy for me,” said Caroline Payne.
You can’t miss her when she’s wearing her pink, sparkly sneakers that can light up a room.
Even though Caroline is small for a 15-year-old, she isn’t short in personality.
“She was always the big personality in the room, so she might be a tiny little thing, but you knew she was there from across the room,” said Rhonda Payne, Caroline’s mom.
“Caroline is our spirit, and our excitement. She leaves everyone with a smile on their face,” said Cassidy Calkins, Caroline’s cheer coach.
During the school day, Caroline’s attitude shines just as bright, even if her day-to-day looks a little different. Caroline has mitochondrial disease, a condition that depletes her energy, eyesight, and muscles.
“It’s hard for me to see most things that people can,” said Caroline. “I have to remind people that I can’t run or walk as fast.”
The mitochondria are the “powerhouse” of human cells. But, if your mitochondria cells don’t work correctly, your body can have a harder time developing due to a lack of energy.
“Caroline was born prematurely, and until she was five years old, we didn’t have any diagnosis. There were all kinds of medical problems,” said Rhonda. “She was so little that she would take up the size of my arm.”
After five years of testing, Caroline was officially diagnosed with mitochondrial disease. To her mom and dad, that diagnosis finally provided some clarity.
“Everything sort of fell into place based on what we knew about mitochondrial disease and what we learned about mitochondria,” Rhonda said, “everything sort of started to make sense.”
Caroline’s mom and dad realized early, the closest mitochondrial awareness group was three hours away in Buffalo, New York. So, Rhonda called the national nonprofit for mitochondrial disease, called Mito Action.
“I said, ‘Hey, you know what’s around here?’ I got a call back and they said, ‘Start something,’” said Rhonda.
What started as an idea for Caroline turned into an annual race on Mitochondrial Awareness Week – the last week of September. Over the past seven years, the race has raised over $55,000 for families in Central New York impacted by mitochondrial disease.
According to the Mitochondrial Disease Foundation, mitochondrial disease is diagnosed in one in 4,000 kids every year – and while there is no cure yet, the Food and Drug Administration (FDA) recently approved its first-ever therapy for Barth Syndrome, a subtype of mitochondrial disease that affects young boys’ hearts.
“It’s a monumental week for the Mito (short for mitochondrial) family,” said Kira Man, CEO of Mito Action.“If just one person understands mitochondrial disease a little bit better, then we’ve taken a step forward.”
Caroline’s nickname is ‘Tiny Liney’ to her family and older sister Lauren for a reason.
“She’s almost 15 and she doesn’t look like it, but she doesn’t let that stop her,” Lauren said. “I think if there is anything we can learn from her, it’s to not let anything hold you back.”
With a supportive family by her side and a community to uplift her, Caroline doesn’t let mitochondrial disease define her personality or her ability to light up any room.