Five-year-old Piper-Kohl Kelly’s parents were told she wouldn’t be able to walk after she was diagnosed with spina bifida. However, the little girl has not only defied the unimaginable odds stacked against her but is now able to run.
“I never thought she’d be able to do something like that,“ Piper’s mom, Georgia Axford, 24, said. “Sometimes it doesn’t feel real. I think back to what we were told, and they were negative about Piper’s diagnosis.”
During their 20-week pregnancy scan, Piper’s parents were told their unborn baby had spina bifida.
Spina Bifida is a condition that causes weakness or paralysis in the lower limbs, and the condition is usually apparent at birth. Those suffering from the medical condition usually need to rely on support or crutches and, in severe cases, can be wheelchair-bound. Doctors had believed this would be the case for Piper.
However, wanting to give their child a better chance at life, Piper’s parents decided to travel to Germany for a treatment that cost them over $11,400 when Piper was in her mother’s womb.
“We were prepared to give Piper whatever support she needed,” Ms. Axford said.
Piper was born in July 2018 at 30 weeks gestation and was named after surgeon Dr. Thomas Kohl, who shares the same birthday as her.
After spending 52 days in intensive care, Piper was home and began to live life normally with her parents. Doctors had suggested that she would need a shunt at some point so her parents had to play the waiting game until she showed signs of needing it.
When Piper was 6 months old the time was right, and she was fitted with a shunt, which she’s had for four years now. Her parents say she’s never had any problems with it.
When she was 2, she was given a walking frame. Although she doesn’t use that anymore, she still has it in case she needs extra support.
“She used it for about a year while she was starting to walk, but now she walks ... independently, “ Ms. Axford said. “She does get really tired and can’t go for really long distances, but she does so well, especially considering what we were told.”
The family has also kept in touch with Piper’s surgeon, Mr. Kohl.
“I think our experience was a lot easier because of Piper’s surgeon,“ Ms. Axford said. “We still speak to him!”
The family updates him on Piper’s progress whenever she reaches her milestones.
While the family’s journey hasn’t been easy by any means, Piper’s parents are filled with pride at their daughter’s progress – and are hoping to continue to witness her achieve whatever she puts her mind to.
“It hasn’t been all rainbows and sunshine,” Ms. Axford said. “Piper went through a major surgery at 6 months old and it’s been hard over the years with all her physio and doctors.
“It’s a miracle that she’s been through it and is who she is today. She’s been through a lot in her life.”
Piper loves coloring and anything to do with arts and crafts. She enjoys attending school and is surrounded by a good circle of friends.
Sharing more about her personality, Ms. Axford said Piper is clever, kind, and caring.
“She beats the odds all the time—and whatever she does, I’ll be so proud of her,” her mom said.
