The young bub had no head control, poor vision, was unable to stay awake for long periods of time and began experiencing epileptic fits.
He was admitted to Perth Children’s Hospital for the first time in June and was soon put on five different anticonvulsant medications, including steroids and Vigabatrin, to try to control the seizures, with no success.
Mrs Goodwin said when Winnie was on a high dose of steroids, he slept for three days straight and, while the seizures subsided, they soon returned, with him waking up screaming for up to three hours on end.
“I hadn’t heard him cry for seven weeks and then when he went on the steroids he woke up in the night and he was just screaming, crying for three hours,” she said. “That broke my heart.”
Having tried every medical treatment available to them, the Goodwins successfully applied for Cannabidiol and received funding for three months’ worth of the treatment, at about $400 a week.
“It’s only since we started using the CBD oil that Winnie has longer awake periods of up to an hour, where he actually smiles and giggles,” Mrs Goodwin said.
“The CBD oil has greatly improved his quality of life, by reducing seizure activity and clearly giving him some pain relief and increasing his wakefulness.
“We saw real improvement within three days of introducing the CBD oil and for the first time we saw Winnie go 48 hours’ seizure free, which was massive. It was amazing.
“Before going on the CBD oil, Winnie was having 20 cluster seizures that added up to 100-plus a day and now, after using the oil, he has just one to two clusters on average a day.”
As a result of Winnie’s condition and the need for full time care, the Goodwins have been reduced to one income with an increasing financial demand due to medical equipment, medications, therapies, respite care and day-to-day costs such as hospital parking.
To help fund their “new normal”, Mrs Goodwin said a GoFundMe page had been started because, if they didn’t get further funding for CBD treatment, they would be reliant on community support or forced to sell their family home.
Winnie has spent a lot of his short life in hospital and was recently re-admitted after contracting a chest infection following a seizure. He is fed through a tube and is often on oxygen.
Mrs Goodwin said last week Winnie had such a severe seizure that he turned white and stopped breathing for a few seconds.
“He’s certainly a fighter and he’s quite stubborn. which he gets from both parents, but in this situation it’s quite useful,” she said.
“He’s quite cheeky and he doesn’t have many wake periods but when he had the little two-minute seizure, and stopped breathing, I was distressed and my heart was racing but when I look at him he opened his eyes and giggled.
“He’s a good little critter who is smothered by love.”
With Winnie’s future unknown, Mrs Goodwin said she and her husband were in contact with palliative care representatives, with the goal of cherishing as much time together as a family as possible.
On Sunday, Winnie was baptised at PCH surrounded by his parents and older brothers Joshua, Wyatt and Jacobie, with Mrs Goodwin saying they hoped to have him home soon to settle into their new normal.
Lauren is a casual reporter and producer for WAtoday.