Fundraisers for Tamara DeLosReyes
- 8 a.m. to 3 p.m. today and Saturday, Sept. 6-7: Large yard sale, 1706 S. Methow St. in Wenatchee.
- 6 p.m. to closing on Tuesday, Sept. 24: A percentage of sales and all tips at both Blue Spoon Yogurt shops, 1134 N. Miller St. in Wenatchee, and 305 Valley Mall Parkway in East Wenatchee
- Donate by mail, send checks to Tamara's Tomorrow Fund, Numerica Credit Union, 477 Grant Road, East Wenatchee, 99902.
- 9 p.m., Friday, Oct. 11: Band, silent auction and raffles at the Clearwater Steakhouse & Saloon, 838 Valley Mall Parkway in East Wenatchee.
EAST WENATCHEE — Ever since Tamara DeLosReyes was a baby, she had to be fed cornstarch every four hours, 24 hours a day.
Cornstarch, her mother Mickey says, absorbs through the stomach and not the liver. And when you have Glycogin Storage Disease like Tamara, you have to absorb your food through your stomach.
The East Wenatchee family had grown used to this routine, and with a closely managed diet, Tamara did really well for several years.
“We thought we’d be doing cornstarch till she was 90,” her mom said.
Now, at age 18, after a bad spell when Tamara spent most of the last six months in the hospital, doctors have recommended a liver transplant.
“They finally decided because her liver has such issues, that she needed a new one,” Mickey said.
They had discussed it and were bracing for a liver transplant when the other shoe dropped. Doctors discovered that Tamara has a leaky heart valve, and in order to have a liver transplant, she must also have a new heart.
“When I got that phone call, I just about lost it right there,” her mother said. “He said they’d do both at the same time, and that’s never been done at Children’s Hospital” in Seattle, she added.
Three different fundraisers are scheduled over the next month to help Tamara and her family with medical expenses and travel costs. They include a large yard sale in Wenatchee today and Saturday; business profits donated by Blue Spoon Yogurt on Sept. 24; and an evening with entertainment, an auction and raffle at the Clearwater Steakhouse & Tavern on Oct. 11.
Tamara is DeLosReyes’s youngest child — 13 years younger than her next youngest. She was initially their foster daughter, and they adopted her as a baby, before they knew she had this disease, which DeLosReyes describes as “kind of like the opposite of diabetes.” That is, she has low blood sugars instead of high. Her body takes in glycogen, but it doesn’t release it.
Just as some parents track their children’s growth with lines on a wall, DeLosReyes has followed Tamara through years and years of cornstarch meals. “We started out at 2 tablespoons, and now we’re up to 90 grams (per meal), so that’s a lot of cornstarch,” she said. “When we started, it cost 49 cents a box, and now it’s $1.69.
DeLosReyes said she’s obviously anxious about both the heart and liver transplants — whether doctors will find a match, whether they can make it to Seattle in three hours if the weather or traffic is bad, and whether Tamara’s body will accept her new organs. But for now, she’s mostly trying to stay grateful for all the wonderful years they’ve had together.
“But I’m also trying to remember, this is God’s deal, not mine,” DeLosReyes said. “I don’t get to make that choice. All I can do is ask.”