Connor was about nine months old when his parents became concerned that he wasn’t crawling. He didn’t begin walking until he was 17 months old, and he walked with a very unusual gait, falling frequently. When it became apparent he had motor skills challenges, his mother Cynthia began searching for answers, answers that turned out to be difficult to find.
Visits to doctors and area hospitals led to misdiagnosis after misdiagnosis, including Muscular Dystrophy and Cerebral Palsy. When testing showed a suspected tethered spinal cord, Connor underwent surgery to “de-tether” the cord. In the months that followed, Connor’s walking showed little improvement. As time went on, he began to show signs of upper body weakness. He was slowly losing more and more functioning.
As a preschooler, Connor used a walker and had braces on his legs. By kindergarten, he was using a manual wheelchair whenever he became tired from walking. By first grade, he used a power wheelchair as a back-up to his walker. As he went through second and third grade, the power wheelchair took the place of his walker.
Connor was so physically challenged that he was only able to attend elementary school with the help of a full-time aide. Ultimately, he became so weak that he couldn’t sit up without falling over. While his classmates were wonderfully supportive, Connor knew he was different and didn’t know if he’d ever be like the other kids.
Well-meaning doctors did their best to help, but didn’t have answers. Unable to determine what was wrong with their son, Connor’s parents faced frustration and fear, heartbroken for their young son who would likely face a lifetime of limitations and 24/7 care.
It was during the many trying years of doctor visits, consultations and testing that Connor’s parents took him to see Dr. Wang at DDC Clinic, marking the beginning of a years-long relationship and the path to an answer.
“I was in need of a doctor who would really listen to my concerns and insights, and be willing to delve into the details of Connor’s case in an attempt to find an answer,” says Cynthia. “I really needed a doctor who truly cared and was willing to give of himself for the sake of this boy. All of this, and so much more, we found the day we arrived at DDC Clinic.”
Dr. Wang spent several hours with Connor and his parents during their first consultation. More visits followed. Dr. Wang’s genetic testing revealed that Cynthia had a deleted gene that, passed on to Connor, reduced the flow of dopamine and all but eliminated his ability to move.
Dr. Wang’s subsequent diagnosis of Dopa Responsive Dystonia (DRD), a rare genetic disorder, was shared with Connor’s neurologist who prescribed Carbidopa Levodopa. The results were dramatic and life-changing. Almost immediately, Connor was able to pull himself up in his bed, and he steadily progressed from wheelchair to walker. By fourth grade, he astonished classmates and teachers by walking into the building on the first day of school. By the time he reached high school, Connor became fully mobile, finally able to enjoy all that comes with being just another teenager. He even ran a cross country race.
“Believe in miracles,” says Cynthia. “However dim the situation may seem, there is always hope. When you least expect it, you could turn the corner in that tunnel of darkness and find yourself at the end…looking at the light.”
Connor is now an adult with a fulfilling career as a nurse, and he says he recalls the care and compassion he received at DDC Clinic every time he connects with a patient, sharing with them the importance of never giving up.
“DDC Clinic is a calming, loving, caring place,” Connor says. “They put your best interests first, always. They are family.”« To patient stories