Kanan Yamamoto, now a 15-year-old Kaua‘i High School sophomore, became the first child to be diagnosed with Aarskog Syndrome in Hawai‘i back in 1993. The rare genetic disease affects height, muscle structure, skeleton and appearance of the face, but it
Kanan Yamamoto, now a 15-year-old Kaua‘i High School sophomore, became the first child to be diagnosed with Aarskog Syndrome in Hawai‘i back in 1993.
The rare genetic disease affects height, muscle structure, skeleton and appearance of the face, but it hasn’t prevented Kanan from leading an active, happy life that included horseriding, skateboarding and water sports.
Then, in 2006, Kanan fell while skateboarding, breaking and dislocating his left elbow as he reached out to brace himself. The injury, complicated by Aarskog, was first misdiagnosed on Kaua‘i and has required visits to a slew of different doctors.
“Because of the syndrome, it kept absorbing the bone, and they didn’t know why,” said Tami Yamamoto, Kanan’s mother. “So we did one complete replacement, and it failed.”
For the past year, Kanan has been under the care of doctors Edward Weldon and John Jiuliano at the Straub Hospital on O‘ahu. They worked with eight other surgeons from across the United States to devise a new surgical plan to fix the damage after a procedure to repair the tendons and ligaments did not end Kanan’s discomfort.
In June, Kanan underwent a five-plus-hour surgery that completely rebuilt what Tami jokingly calls “the million-dollar elbow,” and will have a long recovery ahead with six months of scheduled physical therapy to take place every week at Straub.
Kanan’s progress thus far — he has regained a large portion of the range of motion in his elbow, and he is largely pain-free — has encouraged his doctors. However, he is still experiencing numbness in his left ring and pinkie fingers, caused by unknown damage to his ulnar nerve.
“His goal is to get back into the water and bodyboard,” Tami said. “He can’t wait.”
The Kaua‘i All Girls Rodeo Association, co-founded by Tami but now run by friends, has pledged its support, and will hold a “Cowboy Up, Kaua‘i” fundraiser later this month with all proceeds to benefit Kanan and aid in his recovery effort.
“It’s definitely a true blessing that they’ve come forward to help us in times of need,” Tami said. “It’s definitely very heartwarming for me to have all of your friends come together and try to do something great for your family.”
The event, scheduled for Aug. 23 at the Kalaheo Neighborhood Center, will feature a Chuck Wagon Dinner catered by Mark’s Place, country line dancing with Sunday Murch, and kachi kachi dancing with a live band.
There will also be games, prizes and a silent auction. Tickets are $40 per person and on sale now at Del’s Feed in Puhi, Kujo’s Market in Kalaheo and Pineapples & Palms Gallery in Koloa.
“We really appreciate it, and I can’t even express words (for) our gratitude for their thoughtfulness and for starting this fundraiser,” Tami said. “It’s amazing.”
Asked if he had anything to add to his mother’s thoughts, Kanan said with a smile, “It’s cool.”
For more information on the fundraiser, call Linda Antipala at 639-3091.
• Michael Levine, staff writer, can be reached at 245-3681 (ext. 252) or via e-mail at mlevine@kauaipubco.com
