CENTRAL PARK — It was a celebration of life near the bandshell in Central Park where close to 1000 people gathered for the 19th Annual Sickle Cell Education and Awareness Walk.
Many of those in attendance have the disease like 65-year-old Donnette Carroll diagnosed when she was 25.
"Sickle Cell is a global blood disorder that affects millions of people around the world," Carroll, the president of the Sickle Cell Thalessemia Patient Network, told PIX11. "Here in the US, you have only 100,000 people with it so that's considered rare. But it is clearly not a rare disease around the world," Carroll added.
Outreach workers from the Sickle Cell Thalessemia Patients Network talked about what it is like to live with Sickle Cell.
"You really have to watch what you eat, watch how active you are," Chauncy Mudayh, an outreach worker told PIX11. "Sometimes you want to run as far as the next person, but you have to take steps to go that far," he added.
The star of the day, one of the grand marshals of the 5K walk, is a member of the PIX11 family, 12-year-old Parker Todd, the son of PIX11 News reporter Nicole Johnson.
Parker has just written a book called "The Adventures of the Sickler" to helps others who, like himself, have Sickle Cell.
"I went to other hospitals and I saw other kids suffering with other diseases," Parker Todd, told PIX11. "And I just wrote this book for them and to bring out the inner Sickler in them," he added.
"When Parker was born, we said we'd take it one day at a time," Nicole Johnson, a PIX11 reporter told PIX11. "Now that he is 12, he's been crisis free for two years and that's amazing for someone with Sickle Cell. So I am really inspired, excited, and proud."
"This is only the beginning," Johnson continued, "So let's see what happens next year."
A portion of the proceeds from the sale of "The Adventures of the Sickler" will be donated to the Sickle Cell Thalassemia Patients Network.AlertMe