At six months old, Colson Zammit was experiencing up to 200 seizures a day.
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Now, just seventh months later, he is preparing to undergo brain surgery in an attempt to reduce the seizures.
Just a few days after Colson turned sixth months old he started experiencing a high frequency of seizures.
Colson’s mother Taylah Gibbs immediately knew something was wrong.
She said it was extremely difficult to watch him go through such traumatic episodes without knowing what was happening to him or how to help him.
Ms Gibbs originally thought he might be suffering from meningitis.
“He woke up and he was really, really sick. We had to call an ambulance for him,” she said.
“We just couldn’t get him to wake up. He wouldn’t respond to us.”
Ms Gibbs and her family went to Echuca hospital and from there they were transferred to Bendigo Health.
Colson underwent a number of MRI scans, CT scans and x-rays to figure out what was wrong.
He was cleared of meningitis, but hospital staff still had no answers.
His medical team then contacted the neurology department at The Royal Children’s Hospital, which eventually confirmed it was seizure activity.
The family was told to try a variety of different medications for Colson and if they did not work, he would need to attend the RCH in Melbourne.
“Nothing worked,” Ms Gibbs said.
At the RCH, Colson had an electroencephalogram (EEG), which detects the electrical sensitivity of the brain.
This led to him being diagnosed with both focal epilepsy and focal cortical dysplasia in his occipital lobe.
Focal cortical dysplasia is an abnormal organisation of neurons in a specific brain area which can result in an individual being high risk for suffering seizures.
“It just means that basically when I was pregnant with him and he was in the womb, part of his brain didn’t actually form properly,” Ms Gibbs said.
“He doesn’t have the proper connections in his brain so it’s unable to send the correct signals.”
Ms Gibbs said it was difficult to comprehend what was happening to her son.
“I spent a lot of time researching everything myself,” she said.
Then about two weeks ago, after nearly five months seizure-free, Colson’s seizures returned.
Ms Gibbs said the seizures had ceased due to the variety of medications Colson was prescribed.
One medication involved having to crush up and mix a tablet with water, which Colson refused to swallow.
“We then had to have a nasal gastric tube placed so that he would take this particular medication,” Ms Gibbs said.
The medications impacted Colson’s personality and livelihood significantly.
Ms Gibbs said he would sleep for more than 20 hours a day, he lost his appetite for eating and drinking and he couldn’t physically crawl or roll around any more.
“He practically went back to being a newborn baby. He would just lay there, cry and sleep and that was it,” Ms Gibbs said.
“It was really tough.”
The only solution for baby Colson now is to have brain surgery.
“The cortical dysplasia is actually meant to be medication-resistant, which means that nothing works, so the only cure for him is to have brain surgery,” Ms Gibbs said.
“It’s a major surgery. It can take up to 12 hours or longer to do because it is such a delicate procedure.”
Ms Gibbs admits that she and Colson’s father feel nervous about the surgery.
“We’re both scared and nervous about it all, but we also know that he’s in good hands with everyone at the Royal Children’s,” she said.
Colson’s family is currently waiting for the surgeon to make contact to begin discussing dates for the surgery.
The Bamawm family will be required to stay in Melbourne for a long period of time as Colson will need to be monitored closely after his procedure.
“There are no specialists in this area that can look after him if something were to happen afterwards,” Ms Gibbs said.
Ms Gibbs' friend Lori Purdy has opened up a GoFundMe page for the family.
All donations will go towards fuel, meals and accommodation while they are in Melbourne for the surgery.
They will initially stay at Ronald McDonald House, but may be required to stay in Melbourne for an extended period depending on Colson’s condition and recovery time.
Any leftover money that is left unused from the GoFundMe page will be donated to the Good Friday Appeal.
Ms Gibbs will also be holding a good luck with surgery event for Colson, where all funds raised will go towards the Epilepsy Foundation.
“We want to give back to them but we also want to raise awareness for Colson’s specific situation,” she said.
Ms Gibbs is hoping that by raising awareness at the event, people can have a better understanding of what life is like for people with epilepsy.
“Not many people know what epilepsy actually is,” she said.
Details for the fundraiser are unknown as the date for surgery has not yet been confirmed.
You can donate to Colson and his family at https://www.gofundme.com/f/please-help-colsons-beautiful-family?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer