When Noah was just 13-months-old, parents Vanessa and Marcus noticed something wasn’t quite right with their youngest son.
“We started noticing he was doing this little eye-dart and lifting his hands, like spasms. We knew something wasn’t right,” said Noah’s mum, Vanessa.
Their local GP referred them to a paediatric specialist at The Children’s Hospital at Westmead (CHW), who suspected Noah could be suffering from epilepsy. After Noah’s first EEG test, they received the phone call every parent dreads.
“They rang and said, ‘you need to come back immediately.’ That’s when my stomach dropped and we knew we were in for something,” recalls Vanessa.
They rushed Noah to the Emergency Department that night, where he was admitted. The next day, the clinicians explained Noah was suffering from infantile spasms - a type of seizure that occurs in babies.
In June 2019, after undergoing an MRI, they found Noah had a Focal Cortical Dysplasia, causing a malformation in his left frontal lobe and the possible origin of his seizures. Following a PET scan in February 2020, they found that he had seizures coming from multiple areas of his left hemisphere.
“That was when we got the worst prognosis. His spasms developed into tonic seizures and it was likely he was going to continue to regress in his development,” says Vanessa. “We were told he was going to need to attend a special needs school, have lots of intense therapy and his condition would develop into Lennox-Gastaut Syndrome – severe epilepsy causing development delay.”
Just before Christmas, Noah started having drop attacks and drop seizures where, in a split second, he would lose all control of his body.
“There was no way to predict it. I remember one day we were walking and a drop seizure came over him and he just fell to the floor, hitting his head and cutting it open on the edge of the pavers outside. We always had to consider where he was standing and what the risk around him was,” explains Vanessa.
By January 2021, Noah’s condition was only getting worse. Vanessa and Marcus were concerned about Noah’s quality of life being impacted. Not being able to control where and when his seizures would occur. “We kept wondering, is this going to be his final head injury? Is this going to be a catastrophic seizure? Is it going to be a catastrophic drop?,” they said.
Vanessa and Marcus spoke with neurosurgeon, Dr. Mark Dexter to discuss options for brain surgery. They were told Noah had a 50/50 chance of the surgery being successful, but without it, he may die.
Together they made the difficult decision to operate. On the 28th of June, 2021, exactly two years from his initial diagnosis, the family received the news they had been hoping for; Noah’s seizures had disappeared.
“We couldn’t believe it. We always thought that it was just going to help, but I hadn't allowed myself to believe that it could completely stop his seizures. I had to ring them back again that afternoon and ask, ‘Did I really hear you correctly that the EEG was normal?”
Noah is now three years old and has a go-getter attitude. He has weekly occupational therapy, speech therapy and physiotherapy and is developing really well, achieving significant milestones for his age.
“He can now communicate, ‘I love you’ and he’ll get your face and give you a big kiss or blow you a kiss,” says Vanessa.
“Noah’s neurologist, Dr. Deepak Gill fought for Noah and we’re incredibly grateful for him and the whole team. I'm in awe of them, and we are eternally grateful for all they have done and continue to do. I could not sing higher praises of them.”
Noah is almost a different child after undergoing life-saving brain surgery. You can help ensure kids like Noah can continue to access life-saving care and treatment, wherever and whenever they need it. Donate today.