HARROGATE, Tenn. — Lincoln Memorial University-DeBusk College of Osteopathic Medicine (LMU-DCOM) students will host Cooper’s Carnival on Aug. 15, from 11 a.m. to 4 p.m. at Harrogate City Park (150 TN-63, Harrogate, TN 37752). Hosted by LMU-DCOM Pediatrics Club and Physicians and Students Serving Appalachia Gaining Education (PASSAGE), the event is a fundraiser to raise money for the Christianson Syndrome Association as well as raise awareness of this rare disorder.
Cooper is a little boy in the community of Harrogate, Tennessee that has Christianson Syndrome. He is the only child diagnosed with Christianson Syndrome within Tennessee, Kentucky and Virginia. His mother, Heather Jackson, reached out to LMU-DCOM students for help in raising awareness for the disorder. That is when Jackson heard about Friday Nite Friends, an event held by PASSAGE where medical, nursing and undergraduate students provide care for medically fragile or special needs children and young adults to give caregivers a chance to take some time for themselves.
“I have been completely overwhelmed by the enthusiasm I have found from these students,” said Jackson. “It is incredibly humbling that they want to help.”
Christianson Syndrome is a very rare genetic condition that primarily affects the nervous system and becomes apparent in infancy. The features of Christianson Syndrome include delayed development, an inability to speak, problems with balance and coordination and difficulty learning to walk and stand. Most affected children have recurrent seizures that begin around age 1 or 2. Children with Christianson Syndrome have a happy demeanor with frequent smiling and spontaneous laughter.
Jackson sits on the board of the Christianson Syndrome Association and says the disorder may not be as rare as it seems. When asked how rare the syndrome is, Jackson said, “I think there are many boys out there like Cooper who are undiagnosed. As of right now, we know of around 50 worldwide.”
Cooper’s Carnival will feature food, games, a fun run, clowns, face painting, a bouncy house and several activities for kids. The entrance fee is $5 per person or $10 per family. To pre-register to attend the event or to make a donation, visit http://alumni.lmunet.edu/cooperscarnival. For more information about Christianson Syndrome, visit CSA-CARES.org.