January to February of 2024, When Ben was in the 7th grade, we started to notice that his walking gait was a little more awkward than his usual. At the time, it was slight. In March of 2024, Ben had a routine physical with his pediatrician where she also noticed that he was showing signs of what she thought to be spasticity in his legs. His range of motion was not normal. It was also noted that his spine may have a slight curvature (scoliosis). This was the beginning of a nearly 2 year journey to find answers for Ben. This journey led us to multiple orthopedic doctors and orthopedic surgeons, in multiple cities across NC. We were also referred to Physical Medicine doctors, Genetic specialists, and eventually Pediatric Spine specialists, who told us with confidence that Ben's spine was not the issue. During these months of "doctor hopping, " Ben was also doing physical therapy, with no improvements. He was also tested for Multiple Sclerosis and at one point we were also told this could possibly be Cerebral Palsy. He had multiple xrays, and eventually multiple MRI's and endured more than one electromyography test (EMG). In the summer of 2025, after we were once again referred to another doctor and told that he may "just be growing too fast" we decided that Ben needed to see the best of the best. We were willing to travel to wherever and see whoever to relieve his pain. At this point, his mobility was extremely limited and his pain was something he lived with every single day - especially when he needed to be on his feet for longer than 10 minutes. This made his 8th grade year at school very challenging on many different fronts.
Our search very quickly led us to the Paley Institute website. It did not take long to see that these doctors were well educated successful experts in rare conditions that affected mobility and muscle function. Our first consultation was with Dr. Craig Robbins who, after a thorough examination, led us to Dr. David Feldman.
It was Dr. Feldman and Dr. Arun Hariharan who gave us a clear and concise diagnosis and told us what needed to be done to help Ben return to normal mobility. The diagnosis was Congenital Spinal Stenosis and Ben needed a spinal fusion of the lumbar region - in doctor terms: "lumbosacral laminectomy, decompression and posterior spinal fusion." We scheduled the surgery for July. Ben's surgery was handled with such care and compassion. Recovery was tough at first, but over the following weeks and months, we quickly started to see Ben transform his walking gait. His legs started to gain more range of motion and most importantly, his aching pain was gone. He was able to attend Band Camp in late August approaching his first year of high school! He marched in parades all through the Fall, and with each passing week was moving better and better. He is now the active 14.5 year old he should be, playing basketball at every waking hour, moving fluidly and pain-free.
The Paley Institute, Dr. Feldman, and Dr. Hariharan changed Ben's life and gave our family the gift of being able to move forward from this and to focus on the "usual" things. The relief given to us all is immeasurable and we are/ will be forever thankful!
Kat, Andy, Jay, and Ben
- Ben
