“MILLY was having seizures throughout the day and at night, so that's why we had to have the surgery. It was our only option because the medication wasn't working anymore.”
In September last year Milly Wagenaar was just four-months-old when she started having seizures at night.
After having an MRI, Milly was diagnosed with epilepsy and a brain lesion which was causing her to have the seizures and part of the epilepsy.
At the worst point, Milly was having up to 70 seizures a day, while in hospital, which were eventually able to be controlled with medication and the family took their baby home.
But then in December, a few days before Christmas, the seizures started again.
Neurologists referred the family to the Royal Children's Hospital, because by then, the only way to control the seizures was through surgery.
Milly’s first Christmas was spent in hospital where she underwent another MRI and a PET scan in preparation for the surgery, and then went home to await a date for the operation.
Last week, on Wednesday March 26, and coinciding with Purple Day, which is a day observed to raise awareness and promote understanding of epilepsy, Milly successfully underwent surgery.
“They managed to get a lot of the brain lesion out and remove all that tissue, but the lesion was connected to her right arm and leg movements. We think that she's probably going to have a permanent disability from that because at the moment she's not moving her right arm and leg at all,” explained Amy Wagenaar, Milly’s Mum.
The ten month old had been awake after the operation, was in a stable condition and was interacting with her mum.
Milly also got to face time her older brother, five-year-old Rory, who was the only one in the family able to raise a smile out of Milly, to everyone’s delight.
It will be a few more days before the swelling on Milly’s brain goes down and a full assessment of her condition can be made, and rehabilitation will likely follow.
Amy is full of praise for the work of the neurology team, including the doctors, nurses and cleaning staff who have been available, helpful and responsive around the clock for Milly and Amy.
“It's a little bit sad because she spent her first Christmas in hospital and now she's going to spend her first Easter in hospital, but she's in the best place possible,” Amy said.
Milly's brother, grandparents, parents and great aunt will celebrate Easter and Amy's birthday on Good Friday with cake and a play in the sandpit in the hospital.
Amy said she is grateful for all the support they’ve received from family, friends and St. Joseph’s School in Wonthaggi, where Rory attends, as well as all the money donated to the Good Friday Appeal.
“Until you're in this situation, you don't realise exactly what the appeal means and where that money goes, but the support you get from all the hospital staff is just unbelievable, and you feel like you owe them so much because they just help you, unconditionally,” said Amy.
“If we didn't have this hospital and this medical team for Milly, we don't know where we'd be right now. She looks healthy, but she's not well and just to have the support of this place; even if you just give one dollar, it goes a long, long way.”
