Harpey K's Story

“Harpey K” is the nickname we call our 2 year old daughter, Harper Kenning. She is sharp, smart as a whip, and very silly. She has the laugh of an overserved smoker that takes over her entire body and makes everyone within 10 feet join her. Her laugh doesn’t in any way feel like it could belong to the sweet little voice that chats all day long - observing the needs of everyone around her - reminding her family to feed the puppy, asking the cleaner to please sit down, making sure we bring an extra plate of food to dad in his home office, and making sure her baby brother is rocked, pacied, and fed at all times. It’s Harper’s kindness and her light that sets her apart from most kids her age. If she hugs one person in the room, she looks around to make sure everyone in eyesight gets one too… as to not be left out. She loves “bling bling,” sparkles, pink & purple, and all things girly. She has been through more than most of us have in a lifetime, yet that resilient spirit continues to be soft, considerate of others, and silly. This spirit is the first of many miracles we’ve received as a family around her diagnosis.

As this capable, smart, and resilient girl ages so many resources are pulled in close to ensure she has the best care, treatment, and therapy possible. Our goal is to keep her healthy and to help her experience life to the fullest! Part of that means looking outside herself and her own diagnosis; being a part of her community and helping others. 

The Harpey K foundation is in place to support Spina Bifida related research and support. Its funds are currently focused on supporting the Dr. Gregory Heuer research fund at the world-renowned Children’s Hospital of Philadelphia. This research is aimed to provide better results for people receiving a diagnosis like Harper’s. Dr. Heuer is one of the world’s pioneers for spinal closure on children with Spina Bifida. He performed Harper’s spinal closure the day after she was born and 10 days later placed a life-saving shunt in her brain. He saved her life.

 

What is Spina Bifida?

Spina Bifida is the most common permanently disabling birth defect. If you can imagine a sheet of cells very early on in embryonic development folding up at each end to form a tube, spina bifida happens when the tube does not come to a complete close. Another illustration to think about is the seal of a ziplock bag that is not pressed all the way to the end. It happens for unknown reasons. With Spina Bifida, there is nerve damage at the point of the opening in the spinal cord and anywhere beneath it. Harper has the most severe type of Spina Bifida, Myelomeningocele. She has paralysis below her knees and lacks sensation in other areas of her body. For some, this means they’re wheelchair bound, others will walk with a walker or crutches. In most cases, wheelchairs are used for long distances and a walking aid for short journeys.

 

Additional resources if you want to learn more:

More about Dr. Gregory Heuer

What is Spina Bifida Video – Childrens Hospital of Philadelphia

Myelomeningocele Explained