Fundraiser will help dying mom pay bills
By Eloise Aguiar
Advertiser Staff Writer
A rare disease that turns blood vessels into bone and causes severe pain, amputations and, ultimately, death, has struck a 39-year-old Kāne'ohe mother.
But Janell Araki, who contracted calciphylaxis three months after suffering renal failure during Thanksgiving week 2008, said she doesn't dwell on her illness and tries to live one day at a time.
Araki credits her family and friends with buoying her spirits as they help with her care and operate her business, Precision Sound, which provides sound systems for weddings, conventions, parties and other events.
Facing Janell's impending death was difficult for the Araki family in the beginning, especially for 15-year-old daughter, Jayna, but time and counseling have brought them closer together, Araki said.
"When I'm down, they pick me up and they help me through just about everything,"she said. "I'm truly blessed."
Calciphylaxis is a kidney-related disease in which calcium accumulates in small blood vessels in the skin. The disease produces purple or red lesions typically located on the lower extremities or abdomen that can develop into painful skin ulcers.
Amputation is sometimes necessary to remove dead or contaminated tissue to avoid infection, and Araki has lost five toes on her right foot, the big toe on her left foot and part of a finger, said Dr. James Wong, a vascular surgeon who is treating her.
Patients with this condition usually have experienced kidney failure and, like Araki, have undergone kidney dialysis.
Araki has lived with Type 1 diabetes since childhood, but Wong said calciphylaxis can strike people whose kidneys have not failed and to those with rheumatoid arthritis.
Wong said that he has treated only four or five patients with the condition.
"I think we'll see more because you have a high population of diabetics (in Hawai'i) and we have a high population, therefore, of kidney failure patients on dialysis," he said.
Calciphylaxis is difficult to treat because of its rarity. Doctors may see only one or two dozen people with the disease during their medical careers, Wong said.
"Nobody has a good idea of how to treat this," he said. "There aren't enough people to do randomized trials."
Experimental treatments can be costly, and Araki's out-of-pocket medical bills have climbed as high as $50,000.
The family endured an additional setback in October when Janell's husband, Darren, 39, suffered a stroke, landing him in the hospital with his wife.
Fundraisers have helped, but Janell's multiple hospital stays and other medical expenses continue to mount, leaving the family with a current debt of $30,000.
Another fundraiser is planned at the Rumours nightclub on April 25, featuring local entertainers who have befriended the Araki family. They include Holunape, Pali, the Gregg Hammer Band, A Touch of Gold and Elements.