A mother is hoping to use her son’s spina bifida as a way to inspire others as she documents her toddler’s journey, and that of others, through the lens of a camera.
With a big smile on his face, two and a half-year-old Chance Kern walked to his big sister, Hope.
Chance was born with spina bifida, a defect that develops in the first month of pregnancy when the spinal column doesn’t completely close.
Chance’s mother, Amanda, turned her passion for photography into images of joy and encouragement for other families dealing with the disorder.
“It was just something special. I was able to capture a little bit of their spirit and the little persons that they were,” she said.
“They are happy and they have so much to live for and so many options that I don’t think we give them credit for,” said pediatric neurosurgeon Keyne Johnson.
Amanda’s family has spent a lot of time in the hallways of the Arnold Palmer Pediatric Specialty Practices.
Chance had his first surgery after he was just four hours old. Since then, he’s had 11 others.
Three-year-old Grayson Portnoy also has spina bifida, and he’s not letting that slow him down.
“He’s just your typical boy who’s running around getting into stuff and being silly,” said his mother, Melissa Portnoy.
Amanda began taking the photos a couple years ago as part of a fundraiser. Since then, the community of families has turned to each other for support.
Amanda hopes the images will be inspirational, not to show what can’t be done, but what people with spina bifida can’t do yet.
“They do become functioning members of society. Whether it be a teacher, doctor, or nurse, or a musician. They hold careers as well and they have just as much purpose as any other person,” she said.
“I am hopeful the pictures kind of portray the love and the spirit of the kids that I’ve experienced.”
Amanda maintains a blog about her photography at www.amandakern.com.