True Vision

Noah is not interested in giving in to limitations, as evidenced by his artistic skills. Here, he’s with his sister, Maya and during his pilgrimage to Lourdes, France (top right). Photo courtesy Hawaii Pacific Health

Noah Kaniaupio was sitting in church when he realized something was wrong with his vision. He turned to his mom, Lei, to tell her he was having difficulty seeing. “I thought it was an eye thing,” Lei recalls. She took him to Dr. Malcolm Ing, who ordered an MRI. They were driving home when they got the call with the results: a mass was growing on Noah’s optic nerve and pituitary gland.

Noah was later diagnosed with a pilocystic astrocytoma brain tumor, which has caused permanent damage to his optic nerve and other areas of his brain. “This brain tumor caused permanent damage to his vision and sense of smell,” Lei explains. “He has no vision in his right eye, no peripheral vision in his left eye. The location of the tumor makes it impossible to remove.”

As a result, Noah had a craniotomy and was in ICU at Kapi‘olani Medical Center for Women and Children following the brain surgery.

“It was phenomenal,” Lei says. “Everyone in the department from doctors, nurses, cleaners were so helpful. They took care of us in there ... they just treated him incredibly well.”

Unfortunately, Noah began experiencing the same symptoms after a year, and he had another craniotomy at Kapi‘olani. “We were in ICU afterwards, then transferred to a beautiful private room with a sleeping area for dad,” Lei says.

“All of the staff was incredible, friendly and always made sure I was comfortable and checking to see if I needed anything,” recalls Dmitri Spadaccini, Noah’s dad.

“They brought in a whole team, including social workers who helped explain the procedures,” Lei says. The team also helped Noah make the transition from hospital to home, even setting up tutoring for him so that he wouldn’t fall too far behind in his schooling.

Today, Noah still goes to Kapi‘olani for MRIs every six months, and he works on his rehabilitation with Kimi Aina at Kapi‘olani. “When he first came out of the hospital, he could barely walk,” Lei says. “She was teaching him how to scan. After the first surgery, she forced him to do therapy, even when he wasn’t feeling well. Because of that, people don’t even know that Noah doesn’t have full vision.”

Noah’s determined to live his life to the fullest. He wants to play basketball, and is working on possibly getting around without a cane. But, Noah’s real passion is art. “He is an incredible artist,” Lei says. Since his diagnosis, Noah has remained very positive.

Lei acknowledges that Noah’s loss has required big adjustments from him and the family—yet he’s up to the challenge, thanks to his attitude and the team behind him at Kapi‘olani.

“The loss was a big one,” she says “He’s never taken a negative attitude about this. It’s always been ‘what can I do? I don’t want to hear what I can’t do.’”

“It’s been the doctors, nurses, support staff, social workers, educators, PT people and on and on and on.”

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