(WXYZ) - Ten years ago Carolyn Clifford did a story called “Little Big Man”. It was about a boy named John Tacket who became the face of a rare disease called progeria.
Now Carolyn introduces us to a “Little Big Girl” who is fighting progeria and inspiring everyone she meets along the way.
When you first meet Lindsay Radcliff, her small stature may give you reason to pause.
But once you hear this 5-year old speak, you can’t help but fall in love with her spunk and joy for living.
Lindsay suffers from progeria. The disease produces rapid aging in childhood. There’s a growth failure beginning in the first year of life. Children with progeria also lose the hair on their heads, as well as their eyebrows and eyelashes.
But in Lindsay’s eyes, she’s no different than any other child. She plays baseball and has even won a few trophies. She’s a Pistons fan. She told us ‘Sheed was her favorite Piston. She even has his jersey. But, she explained, he has moved on to another team.
Lindsay’s mom told us she knows she has progeria and she knows that makes her special, “Obviously she knows she doesn’t have any hair and every once in a while she’ll ask "why don’t I have hair?" But we just tell her God makes everybody different.”
Lindsay loves everything you’d expect a typical 5-year old girl to love – from Hannah Montana to reading a great book. And, she’s smart.
Still, there are challenges. She’s tiny compared to other kids her age. She’s one of only 14 kids in the United States with progeria. And one of 55 in the whole world.
Her mom, Kristin told us the doctors weren’t familiar with it when they diagnosed her, so there wasn’t much information they could give. “And I just felt very alone.”
The Progeria Research Foundation gave them a lot of information. But the more they learned the more fearful they became.
We asked about the scariest thing Kristin found when she was searching for answers. “Life expectancy,” she told us is the hardest to deal with.
Lindsay’s parents were told she wouldn’t likely live past 13. Still progress is being made. When we first did our story on John Tacket, there were no studies. Today Lindsay is taking part in the second medical trial for the treatment of the disease.
Meantime Kristin and Lindsay’s father, Joey, have been sponsoring a walk for Lindsay called Miles For Miracles. This May will be their fifth annual. Anywhere from 300 to 500 walkers attend. They raise awareness about the disease but more importantly, people are inspired.
Joey told us, “We actually had a blind lady come in from Detroit. She had one of her friends drive her up because she heard about Lindsay and she came and did the walk and she told Kristin and I Lindsay inspired her.”
Along with a cure for progeria, Kristin would wish for one more thing for her daughter – acceptance. “Sometimes it’s hard when you go out and other people want to stare. I don’t mind if people want to ask questions, it’s just the staring.”
Meantime, her parents will strive to make every day Lindsay has here on earth as special as the day before.
