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news News Monday, November 23, 2020 Monday, November 23, 2020 7:35 PM - Monday, November 23, 2020 7:35 PM

Boy with cerebral palsy finds perfect harmony with care team

James' story

Boy with cerebral palsy finds perfect harmony with care team

In a symphony, each member of the orchestra contributes an important role. The wind section provides lightness and glee; the strings add depth and emotion; the drums ground the selection and can convey anticipation, excitement or victory.

Similarly, every individual of a health care team plays a part in a larger masterpiece, including the patient and their family.

James and his journey at Shriners Hospitals for Children is a wonderful example of this advantageous alignment.

James’ story begins in 2013 when he first arrived at Shriners Hospitals for Children — Honolulu to receive care for cerebral palsy. Over the years, pediatric orthopaedic surgeons Craig M. Ono, M.D., and Graham Fedorak, M.D., both have addressed James’ various orthopaedic needs, including a surgery in 2015 to alleviate a recurring issue with his hip joint.

But the crescendo to James’ health care journey came when pediatric neurologist Ryan Lee, M.D., recommended the ketogenic diet to address James’ recurring seizures.

“Within two months I was weaned off two seizure meds and noticeable positive changes began quickly,” James said. “I became more aware of my environment since I was not sedated. My mind was more alert and my senses started awakening. I could enjoy my family.”

Clinical dietitian Miki Wong helped James’ mother, Dana, learn to compose different ketogenic meals that would be appropriate for her son’s treatment plan. “Miki is a great help to my mom to teach her how to make the recipes with the special keto calculators on the computer,” James said. “I really enjoy probiotic meals with fermented foods like natto, sauerkraut and poi because they are tasty.” Other foods he enjoys include kabocha pumpkin, quiche and apple crumble.

James continues to visit the Honolulu Shriners Hospital for a medley of services including surgeries and physical therapy, but the 10-year-old is progressing and growing, thanks to the amazing care of his Honolulu Shriners Hospital team.

“Shriners Hospitals for Children is awesome! I am so happy with the doctors, nurses, therapists and others who are a tremendous help to me,” James said. “I am growing in all ways and am so grateful I have the equipment, doctors and therapists at Shriners Hospitals for Children — Honolulu to support me in my growth intellectually, emotionally and physically. I am enjoying life.”

James lists listening to classical music among his favorite activities. He also enjoys kicking and rolling, touching and playing with his switch pads to produce music.

“James’ whole story is a beautiful example of purpose and redemption,” said Miki. “He had such a tough beginning in life, but the amazing family that he was placed with, and the lengths that they went to in order to champion his needs, and the way his story touches so many today, speaks volumes about the purpose of each individual in life.”