Loves to Laugh, Listen to the Acoustic Guitar and Horseback Ride
WHEN AIDEN SHANKLIN WAS 9 MONTHS OLD, HIS MOTHER, NICOLE, NOTICED THAT HE WASN'T DEVELOPING LIKE OTHER CHILDREN HIS AGE. HE HAD LITTLE HEAD SUPPORT, NO TRUNK CONTROL, AND WHEN SHE WOULD GO TO LIFT HIM IT FELT AS IF SHE WERE PICKING UP A RAG DOLL.
Nicole made Aiden an appointment with a pediatrician who diagnosed him with Cerebral Palsy (CP) which is a congenital disorder of movement, muscle tone, or posture. Symptoms of CP often include exaggerated reflexes, floppy or rigid limbs, and involuntary motions.
Aiden lived with this diagnosis for six years until he saw Dr. Adam Aronsky at Children’s Specialized Hospital (CSH). CP is caused by abnormal brain development, often before or during birth – but Aiden’s clinical picture did not fit someone who had CP which gave Dr. Aronsky pause. He suggested Aiden undergo genetic testing which led to the discovery that Aidan actually had a GRIN2B mutation.
“The symptoms of GRIN2B related syndrome are very similar to those of CP,” explained Nicole. “GRIN2B related syndrome is a genetic disorder that causes developmental delay and intellectual disability with other symptoms including low muscle tone and abnormal movements. Because the symptoms are so similar, our treatment plan has not changed but the new diagnosis has provided a lot of answers to my questions.”
At 8 years old, Aiden is wheelchair dependent, has a sensory processing disorder, and functions at a one-and-a-half-year-old level but he loves to laugh, listen to the acoustic guitar, horseback ride, and spend time in the water whether he’s swimming, having tub time, or just running his hands under water. He also sees three CSH physicians at the CSH Mountainside location every three months – they work in unison to help with his treatment plan.
Dr. Aronksy, a developmental and behavioral pediatrician, assists with Aiden’s bone and muscle function. Dr. JenFu Cheng, a physical medicine and rehabilitation physician (physiatrist), provides Botox injections which assist with the parts of Aiden’s body that have high muscle tone (spasticity). And, Dr. Andrea Richards, a board certified neurologist with special qualifications in pediatric neurology, assists with any episodes he may have – she ultimately ruled out that a laughing condition was sign of a seizure and instead found that it was just part of Aiden’s personality.
“Children’s Specialized Hospital has provided us with such excellent care, I couldn’t ask for a better team for Aiden,” said Nicole. “They have given us the opportunity to provide the best quality of life that we can for Aiden. This experience has taught me that it’s ok to ask questions, even if you think they don’t make sense or seem silly. I encourage other families going through similar experiences to go with their gut, ask questions, research everything you can, and share your experiences with others – you never know who will benefit from your story."