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Levant 4-year-old ‘spunky and sassy’ despite rare genetic blood disorder

Posted March 31, 2013, at 4:28 p.m.

LEVANT, Maine — Like many girls her age, Maggie Rudnicki loves makeup, Legos and playing games on her iPod.

She also likes playing with her big brothers — Ethan, 10, and Lucas, who just turned 7 — and is a huge Boston Bruins fan.

But unlike most girls her age, the petite 4-year-old has Diamond Blackfan anemia, a rare genetic blood disorder that prevents her body from generating red blood cells.

“Less than 1,000 people in the world” have been diagnosed with the condition, according to Maggie’s mother, Lauren Rudnicki.

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Because Maggie did not respond to the steroids typically used to treat the disorder, Maggie’s supply of red blood cells is replenished by getting blood transfusions about every three weeks.

“She’s had 90 so far,” Lauren Rudnicki said.

Lauren and her husband, Andy, are hoping that will change after Maggie undergoes a bone marrow transplant with her brother, Lucas, as the donor.

“We had a 25 percent chance with each boy that one of them would be a match so we were very fortunate,” Lauren Rudnicki said. “She still has a chance of complications with a donor sibling, but the chances are not as high.”

Maggie was diagnosed with the condition when she was only a month old, her mother said.

“We thought she had a cold,” Lauren Rudnicki said, adding that a cold normally would not send her running to the pediatrician’s office.

“But she was so tiny I thought, ‘Well, let’s play it safe.’ The doctor a look at her and said he thought she was terribly pale and wanted some [tests] done,” she said.

“He said, ‘Go get the labwork done, go home and I’ll call you if I have any concerns,’” Lauren Rudnicki sid. “We got home and within about 20 minutes, he called and said to hang up and call 911 and get her to the hospital.”

The blood transfusions Maggie undergoes are a daylong process when blood testing, ordering blood and seeing the doctor are factored in, Lauren Rudnicki said.

“She really doesn’t let it slow her down. She’s a busy girl. There’s not much that can stop Maggie,” Lauren Rudnicki said. “She’s spunky and sassy and full of life, very full of life.”

The transfusions are done at Eastern Maine Healthcare System’s campus in Brewer.

“She actually loves going there. She’s got this really nice relationship with a nurse named Delight. And they’ve got a really nice playroom up there,” she said.

“The doctors and nurses there are like family, and we’ve made some pretty close friends with families going through similar situations,” she said. “It’s a bond you wish you never had with other people, but you’re also thankful that you do.”

Though she wasn’t interested in being interviewed by the news media last week, Maggie was eager to show off some of her prized possessions, including a hockey stick presented to her by Boston Bruin Andrew Ference during a visit with to Boston arranged by the Childrens Miracle Network.

“He said it was because she gave him luck,” said Maggie’s grandmother, Bern Rudnicki.

Maggie also pointed out a picture of her favorite player, Shawn Thornton.

Lauren Rudnicki said the bone marrow transplant could take place as soon as this summer.

“It’s not set in stone, but her doctors are hopeful that she’s going to be ready. The hope is that once this is done, she’ll have a completely normal, healthy, transfusion-free life,” she said.

The transplant process will begin with high-dose chemotherapy, the marrow transplant and then a period isolation. Maggie then will be discharged to housing close to the hospital, where she will stay until her doctor says it is safe for her to return home.

While the bone marrow transplant won’t cure Maggie’s disorder, it is expected to eliminate the need for blood transfusions.

“Her doctor pretty much described it to me as, ‘Your life will be turned completely upside down for about a year but the end result will be worth it,’” Lauren Rudnicki said.

The marrow transplant will require that Maggie and one of her parents stay in Boston for more than three months, which will put some financial and emotional pressure on the Levant family of five.

To that end, Bern Rudnicki is organizing a spaghetti dinner and silent auction to help raise money for costs not covered by insurance, including lodging, food and gas.

The fundraiser is set for 4:30-7 p.m. Saturday, April 27, at Brewer Community School, located at the corner of Parkway South and Pendleton Street.

Bern Rudnicki said last week that she is touched by the support she is receiving for the fundraiser.

“People have just stepped up to the plate,” she said, adding that nearly 70 auction prizes have been donated so far and that donors also have come through with most of the food.

“We’re hoping for a huge turnout,” she said.

For more information or to help, contact Bern Rudniki at 852-3066 or at momrud@yahoo.com.

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