As parents, the hardest thing Lee and Amy have ever done is watch their five-month-old daughter go through a complex, rare and life-changing surgery.
“My wife Amy and I knew that the operation was highly dangerous, and there was a possibility that we would lose her,” Lee said.
“We were worried that after the surgery she wouldn’t know who we were, or that she wouldn’t be able to smile or communicate with us. But this extraordinary operation was our only chance to make Ali a happy and healthy little girl.”
Now three-years-old, Ali is just one of the miracle stories to come out of the Sydney Children’s Hospital, Randwick.
Ali was born with severe epilepsy and from day one she suffered regular seizures. As she got older, the seizures got worse and occurred more frequently. Within a few months, Ali was having up to 50 seizures a day.
Ali’s life-changing surgery — a functional hemispherectomy, which is only performed in the most extreme cases of epilepsy — saw one-third of her brain removed.
Luckily, Ali’s age played a huge role in her recovery. Following the operation, her brain was able to rebuild itself, finding new paths for brain waves to control her speech and movement.
The remaining side of her brain learned to look after the tasks that had previously been controlled by the section that was removed.
Due to Ali’s remarkable recovery, doctors say that by the time she is five years old, her brain function will be the same as any other child her age. “Thanks to the surgery, she’s right on track. We’re watching her grow more and more every day,” Amy said.
Amazingly, in the two and half years since her operation, Ali has not had a single seizure.
Although there is a small possibility of having a seizure at some point in the future, Ali now lives a normal life.
“She’s amazing. She’s running and jumping, and her vocabulary is getting better. Her coordination and vision on her right side will always be affected, but it’s a small price to pay in exchange for Ali’s life. She is a very cheeky girl, who exceeds our expectations every day. We simply haven’t looked back,” Amy said.
Ali is one of the faces of the Sydney Children’s Hospital’s Gold Week telethon, which will take place on Monday, June 11, to raise money for the hospital. Make your donation now!
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