CARROLLTON (CBSDFW.COM) – She’s nearly a toddler, but she can’t talk, can’t walk and can’t crawl, and for the parents of Harper Howard, it’s absolutely heartbreaking.
“She’s a 17-month-old child trapped in a two-month-old child’s body,” explained Penny Howard, Harper’s mother.
Harper has a rare genetic disorder. So rare, it doesn’t have a name. It’s simply called CDKL5, which is the gene affected by the disorder.
You can imagine how frustrating it was for the Carrollton couple when doctors had trouble diagnosing the disorder.
“When you have six months of testing and you have nothing, it’s frustrating and disheartening,” recalled Harper’s father, Dustin Howard
CDKL5 affects about 300 people worldwide. It causes intense seizures and spasms that severely impact Harper’s mental and physical development. In some cases, it can be fatal.
“It’s very hard, because everyday you wonder if she’s going to still be with you,” Harper’s mother said with tears in her eyes. “There are kids who have not made it with this condition,” she added.
The family has found a doctor at Children’s Hospital of Boston to study the disorder and to find a treatment. Harper’s parents believe their child could ultimately pave the way to a cure.
“You wonder, why my child? It’s difficult to make peace with the situation that we’re in,” said Dustin. “At the same time we have to believe that she’s here for a reason,” he explained.
Harper’s progress has been slow. She can’t sit up, she’s still fed from a bottle and she needs powerful eyeglasses to see. Her parents say it could take years to perform simple tasks.
But that’s okay with the Howards, because years means there’s still hope for Harper.
“She’s a fighter. I believe she’s going to over come it,” said Penny as she wiped away the tears.
For more information about Harper’s rare condition and how you can help, click here.