At age 17, she was struggling to understand why her baby Kody O’Brien was not developing like other infants. He could not crawl, sit up or walk.

“Doctors called me a lazy teenage mother who needed to go home and spend some quality time with my son,” she said. “From the day he was born, Kody was my world and I spent every waking moment with him,” she said.

Like any good mother, Jenna knew something was not right and demanded a referral to a paediatrician. Kody had his first MRI at 12 months and was diagnosed with Cerebral Palsy and soon after with Epilepsy and Bilateral Perisylvian Polymicrogyria, an extremely rare neurological disorder characterized by partial paralysis of muscles on the face, tongue, jaws, and throat creating difficulties in speaking, chewing and swallowing.

“Since his diagnosis we have been together every step of the way,” Jenna said. “We have been on a journey filled with ups and downs from moments so joyful that I have cried to moments so incredibly painful that I have lost all strength collapsing in tears.”

Jenna said  there are no words to explain how she feels when Kody has a seizure. “He can’t even hold his own head up and he looks at me and I can tell he is begging for help and there is nothing I can do,” she said.

Kody, who attends East Maitland Cerebral Palsy Alliance, has on average 150 seizures a day and constant seizure activity while asleep. “We have tried almost everything to help control his seizures but that’s nearly impossible and he is allergic to a wide variety of anti Epileptic medications.

“Kody’s life expectancy is lower than most and the amount of seizures he is having has made that worse. It isn’t expected that he will live to see his early teens if we do not find a way to decrease his seizures,” Jenna said.

In a glimmer of hope the last option for Kody is a Vagus Nerve Stimulator (VNS) device which consists of a pacemaker-like generator that is implanted in the chest wall and programmed by a physician to stimulate the vagus nerve in the neck. “All other avenues have failed and this is our last resort,” Jenna said.

The device and surgery to implant it costs $20,000. There is no funding for it and neither Medicare nor private health funds will cover it. A fund raising drive has raised just under $6000 and charity events have also been organised including a “Komedy for Kody” night at the Highfields Azzuri Club on Friday, September 9. For more information go to http://kodyspmgbattle.simdif.com/updates-on-kodys-life.html