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CARE Fund Fills Small Needs of OHSU's Young Patients

   Portland, Ore.

From toothbrushes to tires, fund helps often critical patients and their families

John Crumrine couldn't get in and out of bed by himself. He couldn't do his own bathing or take care of his own bathroom needs. When he dropped something on the floor, he couldn't pick it up. He couldn't reach switches and cupboards in his own home. He couldn't reach the counter at the department store to pay for things. But all that changed when he got a new wheelchair thanks in part to the Harold and Arlene Schnitzer CARE Foundation, administered by Oregon Health & Science University Department of Patient Relations.

Crumrine, 18, has osteogenises imperfecta, a genetic disease characterized by bones that break easily -- often for little or no apparent reason. People with this disease can break a rib by coughing or a leg while rolling over in their sleep. Crumrine has had hundreds of breaks. His mother, Marlene, said she stopped counting after the 350th broken bone.

Crumrine had been in the same wheelchair since he was 5 years old. It was not only old and banged up, it was tippy, his mother said. And the chair did not give John the up and down movement he needed even for simple tasks. He needed a new chair.

The problem was that a new chair for John's needs was going to cost about $24,000 retail. The family couldn't afford that. John's father, Bob, disabled with a heart condition can't work, and his mother cleans houses when she isn't needed at home to take care of her son and husband.

Hearing about John's situation, Bodyworks Medical, the company that makes the chair John wanted, reduced its cost to about $18,000. The family's health plan would pay $14,000, leaving a balance of $4,110. Because John has been an OHSU Doernbecher Children's Hospital patient, a social worker, Debora Lamberger, applied to The CARE Foundation, which is designed to help families of OHSU patients who are 25 years old or younger, who live mostly in Multnomah, Washington or Clackamas counties, who have a one-time need for whom there is no other source for help. The fund provided the needed money for a new wheelchair.

The chair revolutionized John's life. It can go up and down and side to side, and takes bumps in the road smoothly.

"It's completely changed my life. I can do so many more things. It has given me freedom. It has expanded my activities during the day because now I can lay down and rest. I can pick things up off the floor. I can reach things in a store and I can pay for them myself at the counter," Crumrine said.

Crumrine recently went to a friend's high school prom.

"That chair can dance," said his Mom.

Crumrine is now planning on going to Brigham Young University--Idaho in September. The school will be able to provide him with an aide and specially equipped room on campus. He's hoping to have enough money saved or get scholarships and hoping to get some financial help in buying a specially equipped car so he can get around while in college. He wants to be a sports journalist, an attorney or an air traffic controller.

"I want to do something big," he said.

The CARE Foundation was started when Harold Schnitzer, a Portland businessman, heard about a little girl who had a badly chipped front tooth. It affected her grades and her ability to communicate. Her family couldn't afford the dental care to fix the tooth. So, he and his wife, Arlene, set up a fund to help young patients whose needs fall between the cracks of other charitable agencies.

"Where we trying to fill in is in the unspoken little things that make a big difference in the child's life, and in their family's life. Even a small amount of money goes so far with these families with sick children. I just wish there was even more money in the fund. Every day there is somebody in need," said Arlene Schnitzer.

The CARE foundation gives about $10,000 to fulfill about 10 requests per month. The requests generally come in through the patients' social workers, schoolteachers, counselors or nurses, said Barbara Glidewell, M.B.S., OHSU ombudsman and director of the Department of Patient Relations. She reviews the requests with the Schnitzers, then, if approved, Glidewell provides what is needed to the patients. The fund is open to anyone who wants to give a donation, no matter how small. As the Schnitzers have seen, even a little donation goes a long way to help a child's life.

The CARE Foundation has filled such needs as buying car tires for a family's car so they could drive to OHSU to visit their child who was in the hospital. It also provided beds, sheets and blankets to the family of a child who was experiencing kidney failure. The family of four had slept in the same bed with one blanket.

The fund also has sent kids to Easter Seals camp, paid for orthodontic surgery, arranged for medication for a diabetic who didn't have health care for a month; paid for a needed colonoscopy that wasn't covered by insurance, purchased an elastic mask for a burn patient to prevent scarring, and it got a microwave for a patient who needed extra calorie intake so he could eat a hot meal before his parents got home. These are but a few of the ways the fund helps young patients and their families.

"It drives me crazy to see the suffering and the doing without," Glidewell said. "The beauty of CARE is that we can help immediately. It gives their families some relief. You can see the gratitude in their eyes and in the tone of their voices."

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