Kabuki Coffee: Raising awareness for Kabuki syndrome

WASILLA—Chances are, if you stop by the Kabuki Coffee shop in the new Mat-Su Health Foundation building off Crusey Street, you’ll see Rikki King with a glowing smile behind the counter.

Rikki, 17, has a very rare medical condition, Kabuki syndrome. King’s family is doing its part to raise awareness about Kabuki syndrome with the goal that Rikki will grow into adulthood with better care, resources and understanding for her and all the families impacted by Kabuki syndrome.

Rikki’s mother, Rene, created a non-profit organization to raise awareness, incite research and support individuals and families affected by Kabuki syndrome. Rikki’s grandmother, Terre DeVaney, is currently running two Kabuki Coffee shops in Palmer and Wasilla.

Rene said that Rikki is one of three people in the state she could find who have been diagnosed with Kabuki syndrome. Rene said there could be other people with Kabuki syndrome across the state without proper diagnosis. This is why Rene wants to raise awareness and promote change in every corner of society from the medical room and classroom, all the way up to Juneau.

The term Kabuki syndrome was first coined in Japan in 1967 and became a formal diagnosis in 1981. It’s a rare genetic disorder originally believed to affect approximately 1 in 32,000 births worldwide, according to the All Things Kabuki website.

Kabuki syndrome affects each person differently. Those affected by Kabuki experience a wide spectrum of symptoms, which may include mild to moderate intellectual impairment, growth delays, low muscle tone, feeding difficulties, heart defects, cleft palate, skeletal abnormalities, visual impairments, hearing impairments, seizures, communication delays, and autistic-like behaviors.

Patients with Kabuki syndrome can often be underdiagnosed as autistic, according to Rene. She said that her daughter’s mental capacity is essentially at the level of an 8-year-old, and although autism is actually a co-occurring disorder (common for Kabuki Syndrome) Rikki has a total of 61 diagnoses, causing a range of health problems and specific needs.

“She’s super smart in other ways,” Rene said. “… She’s your friend for life.”

On Oct. 27, Rikki and her family joined Palmer Mayor Edna DeVries and others to accept a proclamation that recognizes the need for heightened awareness for Kabuki syndrome and to declare Oct. 23 as Kabuki Syndrome Awareness Day in Palmer. Rene said that she was thankful for the city of Palmer’s support.

“I really like the way they worded this,” Rene said.

Rene said that the proclamation was a good step forward to getting a bill written to get the syndrome recognized across the U.S.

“I know they’re temporary but it’s like step one of 100 to get it done on a national level,” Rene said.

DeVaney operates the two Kabuki Coffee shops under her parent company, White Knight Services.

“For us it’s not about making money it’s about raising awareness,” DeVaney said.

DeVaney said that when Rikki was an infant, she closed down her first coffee shop in Anchorage to help Rene and her husband, Troy, since Rikki had so many unique needs. Now, she gets to have her coffee and drink it too, serving the community next to her granddaughter, who does a little bit of everything in the café.

“That’s a big deal for them,” DeVaney said.

Rikki almost 18 and Rene said that she should have no problem acquiring custody. She wants her daughter to succeed in the work place and transition into adulthood with a steady support system from the family and from the medical professions, legislatures, fellow parents, teachers and everyone else in between.

“They don’t understand it, so you have to fight for everything,” Rene said.

DeVaney said her teenage granddaughter still has that signature, glowing smile and that is her, “ultimate favorite.”

“As shy as she is, when she’s behind the counter, she’s really good with people,” DeVaney said. “That smile of hers, even in the hardest of times, somehow she can make a bright light shine through it.”

Kabuki Coffee is located in both the Palmer State Office building in Palmer and the Mat-Su Health Foundation building in Wasilla. The Palmer location is open from 8 a.m. to 3:30 p.m. The Wasilla location also opens at 8 a.m. and closes at 4 p.m.

For more information about the syndrome, see allthingskabuki.org.