Elizabeth "Lizzie" Bell spent her 15th birthday last month in a hospital bed at University Medical Center, fighting flu and pneumonia.

She's had many, many operations, and more may be ahead.

The young Tucson woman, afflicted with a rare blood disorder, had every reason to sing the blues to a Northern Pima County Chamber of Commerce breakfast audience last week.

She didn't. Instead, Lizzie talked about the good things in her life, her supportive family and friends, her Extreme Makeover Home Edition experiences, and her life's mission – getting healthy people to donate blood, and to be evaluated for bone marrow transplant potential.

The Tucson resident has Diamond Blackfan Anemia, an extremely rare blood disorder that requires her to be pumped with medicine every day, and have her blood transfused every other week.

"I've had needles my entire life since I was six months old," she said. "I even teach the nurses sometimes, if they're new.

"If I can take a needle, you can take a pinch," Lizzie told the group.

Other people's blood has "helped me stay alive," she said. Less than 5 percent of Americans who can donate blood actually do so. One bag of blood saves "up to three lives."

Lizzie's life has had struggles and joys, all of it backed by family and friends who attended last week's breakfast at the Hilton Tucson El Conquistador, and who helped fill and pass out plastic sacks filled with information about blood donation, a bottle of water and a package of instant cereal. "My family's very, very supportive of me," she said.

Lizzie showed a video from her earlier childhood. She wore a pump on her stomach, and had a painful needle stick in her hand.

"That was me about 10 years ago," she said Thursday. "A couple things have changed." She gets a needle in her arm, rather than her hand, and the pump is bigger. She uses it 12 hours a day.

"It's just something I have to do," Bell said.

Lizzie describes herself as a typical teen-aged girl. She likes to dance, to hang out with friends, to travel, to go to Starbuck's. A video image showed Lizzie caked in mud from a wash after a rainstorm. "I don't know what we were thinking," she said.

One way Lizzie might be different than other kids — "I love hospital food, I don't know why," she said, then noting she "loves to feel that protection" a hospital provides.

Lizzie's story has been noticed. In January, Ty Pennington and the "Extreme Makeover Home Edition" TV crew came to Tucson, and surprised Lizzie Bell and her family by tearing down their Foothills house, and building them a new one.

"It was cool, an amazing experience, something I will never forget," Lizzie said.

Pennington is "very down to earth, very nice, funny in his own way," she said. He's helped Lizzie create a new clothing line, A Positive, which is her blood type. She wants to build a portfolio of styles.

Along the way, she's stayed at the Waldorf-Astoria in New York City, saw "Mary Poppins" on Broadway, and threw out the first pitch at a Tucson Sidewinders baseball game. "I actually threw a pretty good pitch," she said.

Lizzie, who just completed the eighth grade, is looking at an online high school. Her condition leaves her immune system weak, and vulnerable. "I've missed a lot of school," she said.

Lizzie said there are 700 people in the world with Diamond Blackfan Anemia. Her bones "don't make red blood cells," she said. Steroids can help Diamond Blackfan patients, but not in her case. She jokes about a photo when she was very young, "so short and so big" because of the steroids. A little older, and "I looked like Yoda," she said. "It was bad."

She needs regular transfusions, and they have become more complicated because she's developed an antibody. Lizzie now needs A-positive, CMV-negative and E-negative blood.

Lizzie doesn't want to have a blood marrow transplant, but it may become necessary because iron has accumulated in vital organs. She's asking people to have their marrow tested for general donation suitability.

The 5th annual Lizzie Bell Blood Drive

World Donor Day, Sunday, June 14

American Red Cross Main Center, northeast corner of Broadway and Kolb

9 a.m.-2 p.m.


Sponsored by the John P. Bell Family Foundation.


All presenting donors receive a pair of flip-flops, and are entered in a weekly drawing for a $250 gift card.

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