Every 11-year old hopes to celebrate their birthday with a cake, balloons and opening presents, but Cooper Jackson’s mother, Heather just wishes her son knew it was his birthday.
Cooper was diagnosed in 2011 with Christenson Syndrome — an extremely rare genetic condition which affects the nervous system. Cooper and his family spent seven years searching for an answer with the help from doctors at University of Tennessee, the East Tennessee Children’s Hospital, John Hopkins University and Duke University.
“I needed to know why my son could not speak, why he would never be like other children. I needed to know what caused it and I needed to know if I could fight it,” said Jackson.
Cooper has recurring seizures, an unsteady gate, moves constantly and presents with the cognitive function of a 9- to 12-month-old. He requires constant supervision, special feeding, and sleeps in a special bed.
While Cooper is non-verbal, his mother knows that he loves her and connects with him through touch.
“He does not kiss or hug like other children, but when he gives you one of his slobbery open-mouthed kisses, it’s a big deal! And when he pats you or lays his face against yours, you literally feel his love and it is something to experience,” said Jackson.
Cooper’s Carnival will be held on Saturday from 11 a.m. until 4 p.m. at Harrogate City Park. With the help of LMU’s DeBusk College of Osteopathic Medicine and the Physicians and Students Serving Appalachia Gaining Education group, Jackson hopes to raise awareness and funds for the Christenson Syndrome Association.
Ultimately, Cooper and his family hope to find answers for other children like himself. His diagnosis was delayed because doctors did not know about Christenson Syndrome.
“When you are a parent of a child who is profoundly affected by an unknown illness, it’s like stumbling around in the dark. The day you receive a diagnosis, it is like someone reaches into that dark room and turns on a light. We want to help shine a light on Christenson Syndrome,” said Jackson.
For more information about Christenson Syndrome, visit www.csa-cares.org.
Reach Kelsey Gerhardt at 606-302-9093 or on Twitter @kgerhardtmbdn.