Aiden, 4, was diagnosed with Sturge-Weber Syndrome when he was an infant. Sturge-Weber is a rare disorder that causes severe symptoms. He has experienced seizures which have left him developmentally far behind. Aiden has glaucoma, for which he had eye surgery.
Aiden also had a facial birth mark that looked like a port wine stain. The mark is often an indicator of Sturge-Weber. He has had laser treatments to lighten the mark.
On the eve of his potentially life-changing surgery at UCLA Medical Center, he was playing under his parents' watchful eye. He was scheduled for a hemispherectomy, a surgery that would remove the affected half of his brain.
"I'm very scared. I mean, just the thought of your child having their brain cut in any way," said Aiden's mother, Rachel Waters.
Just before the surgery Aiden's mother and father kissed him goodbye. The surgery would last all day.
"He has developed seizures, or epilepsy. And those seizures have not been controlled by medications. So, in order to stop the seizures, we're going to take out half his brain," said Dr. Gary Mathern, neurosurgeon.
Hemispherectomy is not a new surgery. However, only about 100 of the surgeries are performed each year nationwide. Experts say the younger the patient, the greater the potential. The goal is to free patients from seizures.
"We have children that we operate on at these very young ages. And they all eventually learn to run and walk. They talk," said Dr. Mathern.
When the surgery began, his mother was emotionally strained.
"He's my hero. He's been through so much and he's still so loving," said Rachel.
Aiden's parents, who are divorced, say when they look ahead, they both dream of a son they can speak to.
"If he actually ended up calling me one day on the phone ... I think that would be pretty amazing," said Brian Waters, Aiden's father.
"And to hear, 'Mommy, I love you,' It would be music to my ears," said Rachel.
Just one week after surgery, Aiden was released so early, his mother didn't even have time to go home and get him new clothes.
"It's almost too good to be true, but it's true! He's going home today," said Rachel. "I just can't believe how fast a child can recover from a brain surgery where they remove half his brain."
The number of people suffering from Sturge-Weber is unknown because it is often misdiagnosed. Aiden's mother hopes to raise awareness of the disease through Aiden's story.
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