That’s 10-year-old Olivia Shain, cuddling her cat Bebe during one of the many hospital stays Olivia’s had to endure in her short life. She has been living with Crohn’s disease – which seldom strikes children – since she was a toddler. Olivia’s West Seattle church and school community are coming together to raise money for her massive medical bills, and inviting you to join them for a spaghetti dinner and silent auction this Sunday. Olivia’s mom, local pet-sitting entrepreneur Demery Shain, agreed to talk with WSB about her daughter, their life, and how you can help:

You may recall hearing about Crohn’s disease — which causes chronic intestinal inflammation — because of the awareness campaign involving Mike McCready of Pearl Jam. There’s no cure, and no sure treatment. That makes it exponentially more difficult when it strikes a child. Its effects are difficult to discuss, but important for people to know about. Olivia Shain turns 11 in June, and is a fifth-grader at Hope Lutheran School in West Seattle, but doesn’t get to spend much time in the classroom because of her painful chronic disease.

Demery says Olivia was 3 when the disease was first suspected, though she may have been born with it. “We kept taking her to the pediatrician because there was blood in her stool.” Even then, she says, the diagnosis was far from obvious, and they had to travel an odyssey of doctors and hospitals before they realized it was Crohn’s. “She has a severe case – with pain from the esophagus on down,” Demery explains. And the drugs used to treat it have painful side effects of their own — Demery recalls a difficult time when her daughter “begged me not to give her the medication.”

Still looking back into Olivia’s early childhood, Demery talks about a year when Olivia did OK without that drug – until a “huge flare-up” put her in the hospital and led to more drug treatment, including one medication that led to a case of pancreatitis, and pain so bad she needed morphine. “She would hit herself and say ‘make it stop, make it stop’,” Demery remembers, while quickly noting that otherwise, Olivia “is so stoic – she never cries.”

After that bout came another drug experiment including a chemotherapy medication. “She was already on a high dose of steroids, which caused puffiness, and other kids would ask, ‘Why is your face like that?'” The chemo drug, which had to be administered with a weekly injection, was impossible to tolerate, giving Olivia headaches that left her lying on the floor with headache, sweats, and other pain.

From there, even more treatments were tried; Demery says school attendance has been “intermittent” for her daughter going back to 3rd grade, when they even went out of state looking for a 2nd opinion at one point. Doctors in California put her through all the same tests that doctors here had – and in the end, Demery says, they “concurred” with the diagnosis, but had no miracle treatments to offer, suggesting that perhaps they increase the level of the drug she was on at that point, one known for treatment of adult Crohn’s. “It didn’t help, and she’s been stagnating ever since, going from one flareup to the next.”

Regardless of what you know or don’t know about Crohn’s, if you have ever had to help a family member or friend through an ordeal with chronic illness, you will identify with this part of Demery’s story — she talks about switching doctors, having to be assertive and hyper-alert during every medical appointment: “When she’s in there, I don’t blink.”

There was a glimmer of hope not too long ago, she says — a new doctor tried a new drug, though it hadn’t yet been approved for use with Crohn’s, or with children under 12. “It was miraculous,” Demery recalls, “in 2 days, no blood in her stool … the first day since she was 3 years old that her pain level was at a ‘2’ … She said ‘I feel great!’ I thought, this is incredible, I took her to the Burke Museum, to the mall, normally we can’t do that, she can go in minutes from feeling good to needing to lie on the bathroom floor.”

That drug isn’t working consistently any more, but Demery still has hope. The one thing that is harder to come by – money to pay for it, and for other aspects of Olivia’s treatment. Demery works 7 days a week running her longtime pet-sitting service, TLC Pet Services; insurance does not cover the kind of treatments it’s taken to try to get Olivia closer to something like a normal life. And for now, drugs are all they can try — some adult Crohn’s patients have surgery, but that is not necessarily the right option for a still-growing child: “They don’t like to fix things with surgery this young – they can only take out so much intestine.”

If drugs can’t slow the inflammation that sears Olivia’s insides with pain, maybe they can help with that pain – Demery says, “There’s a pain drug the doctor talked to me about, blocking neurotransmitters for pain, but if it works, we wouldn’t know if [something was wrong requiring urgent attention].” What’s a mother to do? Love, and pray: “I just want her to be able to have a couple days where she can enjoy the life of a child.”

Olivia won’t be a child much longer, and even now, her mom says, she is starting to display the modesty that naturally comes with preteenhood and advancing adolescence, and keeping things to herself: “She might not let on [what she’s feeling] — except, she goes really, really pale.”

A brighter topic for Demery is the love and support they have received from their church, which operates Olivia’s school, Hope Lutheran. The church is presenting the fundraising dinner and silent auction this Sunday; Demery became a church member a few years ago, though she grew up in the Jewish faith. She says her epiphany came during a low point when she wasn’t sure she could continue caring for her daughter the way she needed to; she says one of Olivia’s teachers came to the house and told her, everything was going to be OK, and would also visit when Olivia was in the hospital: “She would say, ‘Don’t blame God, something will come of all this’. And I realized God gave Olivia to me because he knew, for all the things I had to deal with before, that I would be strong enough to raise this child. She is destined for something.”

You can join those who have been reaching out to Olivia by attending this Sunday’s event; if you can’t go, donations are being accepted too. The fundraising dinner and silent auction — with many enticing items, Demery marvels — is at noon this Sunday at the Seattle Lutheran High School Gym. You can call Hope Lutheran for tickets ($18 each; 935-8500) or just show up; to send a donation by mail, write to:
Hope Lutheran School
Attn. Olivia Shain Benefit Dinner
4446 42nd Avenue SW
Seattle, WA 98116