A Center Grove area girl needs a liver transplant to survive, and her parents want to raise money to not only help cover the cost of the transplant, but the medication she’ll need afterwards.
The four years of Natalie Rose Hodgson’s life have been filled with hospital visits because of a condition called biliary atresia. The condition affects infants and occurs when the bile ducts are blocked, causing the inside of the liver to be scarred. Because bile can’t flow into the intestine, it builds up in the liver, damaging it, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Natalie Hodgson is the oldest of three children, the others being her two brothers, Cameron, a three-year-old, and Warren, who is turning one later this week. Aside from the disease that’s affected her early life, Natalie is a typical four-year-old, said Christy Hodgson, her mother.
“She’s really energetic, she’s really bossy with her brothers. She’s all princess, all girl.”
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Almost immediately after she was born, Christy and her husband, Brett, noticed there was something wrong. She dropped from her birth weight of seven pounds to five pounds within a few days. The whites of her eyes turned yellow, and her skin had an orange hue. At about one week old, she began getting lethargic, and her parents took her to Riley Hospital for Children at Indiana University Health for blood work. After a liver biopsy at four weeks old, doctors determined she had biliary atresia, a condition that affects about one in every 16,000 babies, Christy Hodgson said.
“It was hard to take since it was our first child,” Christy Hodgson said. “Everything happened really fast. I felt from the day we got home from the hospital it was bad news after bad news. At the time the office I was working at was really supportive and my mom was there a lot to help me out. I didn’t know what else to do at the time. You just do what the doctors tell you to do."
Along with her previous symptoms, Natalie Hodgson developed high fevers and vomited frequently. For about a year, her parents had to pay $1,000 per month for medication. Now, they still pay about $400 each month. The Hodgson’s originally hoped Natalie would be the rare exceptional case of a child with her disease not needing a transplant after until she was a teenager, but after her fourth birthday, her condition got worse again, as she had heavy breathing and constant fatigue, Christy Hodgson said.
After more tests, her doctor confirmed Natalie Hodgson had hepatopulmonary syndrome, caused by blood vessels in the lungs expanding and increasing in number. It caused Natalie to have shortness of breath because it decreased the amount of oxygen she could take in, Christy Hodgson said.
“In the next year it can get really bad,” Christy Hodgson said. “It only happens when someone has advanced liver disease.”
Natalie Hodgson was listed for a liver transplant in late July, but doctors told Christy Hodgson that it could take months, or even a year before she gets a transplant. That transplant could cost anywhere from $100,000 to $500,000, and there is no telling how much of the cost insurance will cover. After the transplant, Natalie will have to be on medication for the rest of her life, Christy Hodgson said.
To help cover the costs, a social worker at Riley suggested community fundraising using an account with the Children’s Organ Transplant Association, a non-profit organization commonly known as COTA. Friends, family and community members are raising $50,000 to put in the account. Money is then pulled from that account to cover costs as they arise, according to a news release from the association.
Patrick Richardson, a cousin of Brett Hodgson, organized the association’s COTA for Natalie Rose website, where donations are accepted. Richardson also wants to organize fundraising events such as a golf tournament. Those plans haven’t been solidified yet, but will be advertised on both the website and the Facebook page, he said.
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To donate or get more information on Natalie Hodgson and fundraising efforts, visit www.COTAforNatalieRose.com or visit the "COTA for Natalie Rose" Facebook page.
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