In this country, about 19 people die every day while waiting for an organ transplant.
With one Whidbey Island woman still hoping to get on the organ-transplant list, the South End community is working to raise awareness about the importance of organ donations and will host a benefit party this weekend.
“May Day for Natty J!” benefit is Saturday, May 1 at Deer Lagoon Grange in Bayview. The fundraiser is for Langley resident Natanya Johnson, 31, who is struggling with the long-term effects of type 1 brittle diabetes.
The event hopes to raise awareness about diabetes, as well as organ donation, while helping Johnson deal with rising medical expenses.
Johnson was diagnosed with type 1 diabetes at age 11.
Type 1 diabetes is usually diagnosed in children and young adults, and was previously known as juvenile diabetes. With type 1 diabetes, the body does not produce insulin, the hormone that is needed to convert sugar (glucose), starches and other food into energy needed for daily life.
As a child dealing with a major disease, Johnson said she felt alone.
Going to one of the many children’s summer camps for type 1 diabetics gave her the first clue that she was not alone.
“I remember getting on the bus to diabetes camp and everybody was injecting themselves and drinking diet soda. I felt relieved,” Johnson said.
Although she had moments of clarity about her diabetes, Johnson spent a large part of her formative years dealing with the disease alone.
Johnson’s diabetes got worse and eventually she developed type 1 brittle diabetes, which created a whole new set of complications.
Brittle diabetes, also called labile diabetes, is an uncontrolled type 1 diabetes. People with brittle diabetes frequently experience large swings in blood sugar (glucose) levels.
Presently, Johnson is on dialysis three days per week. She also needs a stomach pacemaker to combat the effects of gastroparesis, a condition resulting from brittle diabetes which paralyzes the stomach and makes it almost impossible to digest food.
Gastroparesis can make diabetes worse by making it more difficult to manage blood glucose. That means that the daily shots of insulin that normally control blood sugar levels, don’t work.
Needless to say, Johnson’s daily battle to survive is no picnic. She suffers from severe nausea and vomiting. She has been on endless quests to find the right doctors and the right medicines.
As a result, Johnson had to give up her job as Prima Bistro’s pastry chef nine months ago and is unable to work.
That was when she got on the waiting list for donated organs. When she hits the one-year mark, she will be on the list for kidney and pancreas transplants.
“May Day for Natty J!” is being organized by a group of Johnson’s friends, led by Gretchen Cole, her former co-worker at Prima Bistro. Cole has been working tirelessly to help her friend and to make the benefit a success.
Just as it did when she was a child getting on that bus to camp, having the support of her family and friends has given Johnson new hope for her future.
“I feel really blessed now with my friends and family. Sometimes when you’re sick, you kind of tuck yourself away,” Johnson said.
“But the positive things have an effect on you and that’s good. You don’t want to let people down.”
Johnson was loathe to leave her job after having established herself as a chef there for almost two years. Cole said everyone at the bistro in Langley has rallied around their co-worker.
“Sieb and Jenn (the Jurrians and owners of the restaurant) have been so supportive of Natayna,” Cole said. “She has a job waiting for when she gets better.”
Planning to get better is a given for Johnson, especially after being bombarded by her support team’s unabashed positivity.
The benefit will include a silent and live auction, live music and dancing.
But besides the goals of helping to raise funds for Johnson’s expenses and having some fun, Johnson is set on teaching people about the importance of organ donation and how it works.
There’s a lot more to the transplanting of organs than meets the eye. For Web site information, click here.
According to the Web site’s “The Gift of a Lifetime” home page, more than 84,000 men, women and children are waiting for organ transplants in the United States. Their survival depends on a huge organ allocation system that links patients with organs donated by strangers.
Johnson said people are often misinformed about organ donation, and with that ignorance comes fear of the unknown. She also said that if you are an organ donor, it’s a good idea to discuss it with family members so that they, too, understand your wishes for your organs in advance.
Meanwhile, while Johnson looks forward to the day she is chosen to receive a new kidney and pancreas, she looks to her community for comfort and, as is characteristic of Whidbey’s own, that comfort comes in waves of support.
When Cole started looking for donations from artists, she was overwhelmed by the immediate response to help a fellow islander.
“I sent out an e-mail and received about 30 responses that same day,” Cole said. “What makes me so happy is that a lot of the auctions on the island are the old guard established by people with a lot of money. But this is a young crowd, and it’s great to see them get into the spirit of giving. I have some very beautiful donations from a variety of artists already,” she said.
Johnson, in her soft-spoken and modest way, underlined her respect for the fact that people want to help her survive.
“Another thing about accepting help and support is that it just makes your life more valued,” Johnson said.
“When you’re alone and not feeling good, you get the feeling it doesn’t matter and you don’t care. But when you hear people have your back — it makes life more valuable,” she said.
“Sometimes you just need other people to let you know that,” Johnson added.
Tickets cost $15 each, $25 per couple. Children get in free.
The doors open at 5, the silent auction is from 6 to 8:30 p.m., the live auction is from 9 to 10 p.m., followed by dancing into the night.
Music is by Eric Allen, James Hinkley and Levi Burkle, Krash Zen and DJ Kettle.
Food will be provided by Edgecliff, Gordon’s and Prima Bistro.
Donations are greatly appreciated and can be dropped off at Edgecliff or Prima Bistro, or mailed to Joy Timoshuk, PO Box 743, Langley, WA 98260.
For more information, call Timoshuk at 360-632-2979.