Meanwhile, her friends in Vermont are organizing to find a donor and pay for the family’s medical bills. “Mikaela is special because she is friendly and fun to be around,” Fiona, 13, of Burlington said. “Everyone that knows her knows she is smart and funny.”
Mikaela was born with autosomal recessive polycystic kidney disease and congenital hepatic fibrosis. These are rare genetic disorders. She has been at the Children’s Hospital of Pittsburgh in Pennsylvania waiting for liver and kidney transplants, with her mother, Heather Sienkiewicz at her side. Mikaela’s father, Mike Sienkiewicz, and brother, Luke, 15, will travel back and forth from Burlington to Pittsburgh until she receives her transplants. Heather said her daughter is now too sick to travel, or talk to a reporter.
Mikaela needed blood transfusions after losing half of her blood volume through bleeding internally in 2004. Severe scarring of the liver made it difficult for blood to pass through, causing pressure to build as the blood tried to find other routes, Heather said. Four veins in Mikaela’s esophagus had ruptured. She has been in and out of intensive care since 2004.
Mikaela’s family and friends have teamed up with the Children’s Organ Transplant Association (COTA), a national charity dedicated to organizing and guiding fundraisers for transplant patients. They are working to raise $150,000 for expenses that are not covered by insurance. Liver and kidney transplants can cost in excess of $500,000, according to a COTA representative.
According to the U.S. Department of Health and Human Services website, 110,296 people are waiting for an organ, 18 people will die each day waiting for an organ and 1 organ donor can save up to eight lives. Each day, an average of 75 people receive organ transplants in the U.S.
Fiona said she wants to raise awareness about organ donation in honor of her friend. “I think it’s important to donate organs because when people really need them, like Mikaela does, once they get them they can return to their normal lives and be happy again,” she said. “It’s hard for her because she misses her dad, brother and her dog Shelbie. She also misses her friends and house, a lot. It’s hard because the things she has to do in the hospital are scary sometimes.”
Heather’s friend, Colleen Case of Burlington, is serving as a public relations coordinator for COTA on Mikaela’s behalf. She said even the best of insurance policies won’t cover everything the family needs, like getting Mikaela’s father and brother from Burlington to Pittsburgh.
“Heather is a long way from home.” Case said. “The Ronald McDonald House, where she stays, is cheaper, but it’s $15 a day and that’s still a lot for someone who is not working.”
Heather has worked for the Burlington School District for eight years and is on a medical leave of absence to care for her daughter.
“Life does go on in Vermont for my husband and son,” Heather said from Pittsburgh. “It’s hard being apart, but Mikaela and I keep busy with cards and letters and we love getting surprises sent to us from home. We do a lot of crafts and paint each other’s nails.”
There is a teen lounge at the hospital where Mikaela has met new friends. “It’s an amazing new hospital with a lot of open space,” Heather said. “She hangs out with other kids her age. She wants to feel good and have the stamina to do what any other teenager wants to do.”
Mikaela loves Justin Bieber, shopping and fashion. “She is shy,” Case said. “There is a part of her that would be mortified to find out that everyone was talking about her, but at the same time she understands what has to happen. This is a girl who knows her ammonia level every day and how much protein she can or cannot eat. This is a girl who can’t have a piece of pizza. It would take her 4 or 5 hours to eat a piece of pizza because of the amount of protein in it. She is living things that we can’t even imagine and yet she is still positive and hopeful.”
A fundraiser called “A Night for Mikaela Sienkiewicz” is scheduled for March 25 at the North Avenue Elks Club where there will be a silent auction, dinner and dancing. In the past six years about $71,000 had been raised for the Sienkiewicz family through a gala and countless community bake sales among other community efforts. There will be a registry at “A Night for Mikaela Sienkiewicz” for people to become donors and a blood drive is being organized in her name, Case said.
Heather said Mikaela would like people to know that it is important to talk about organ donation and about giving blood.
“We want people to think with their heads and hearts,” Heather said. “Mikaela should not be in a hospital 600 miles away from home. She is strong, but she misses home. Somehow she keeps a smile on her face.”
For more information and to doanate, contact COTA Community Coordinator Nancy Winn at 660-8282 or
vtwinns3@burlingtontelecom.net.
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