Dear Henry

Rare disease has their 'world spinning'
Saturday, November 24, 2007

By STEVE DOYLE

Times Staff Writer steve.doyle@htimes.com

Friends raising funds for family's 2 sick children

People here are rallying around a family gripped by a rare and often deadly blood disease.

Scott and Nancy Finnegan recently learned that both their 16-year-old son, Blaise, and 12-year-old daughter, Madeline, have Fanconi anemia. They will eventually need bone marrow transplants to survive.

"My world is spinning," said Nancy Finnegan, a makeup artist at Belk in Parkway Place. "I'm still very optimistic, but once you start the procedures, that's when it gets scary."

Madeline also has aplastic anemia, meaning she has lost some bone marrow, and is being treated by a Minneapolis doctor who specializes in Fanconi anemia. Blaise had a bone marrow biopsy test Wednesday at St. Jude Children's Research Hospital in Memphis to find out if his marrow is also failing.

While the Finnegans wait on those results, friends are scrambling to raise money for their future medical expenses. Neighbors Matt and Tracey Gibson have organized a Dec. 10 benefit golf tournament and silent auction at Hampton Cove's River Course.

"They need to focus on getting better and not have to worry about money to the extent that we can help them," Matt Gibson said. "I would like to raise a minimum of $30,000, but that's just the start of what this family is going to need to help sustain them over the coming months and years."

Prayer groups at Cove United Methodist Church are also raising money for the Finnegans, who belong to Holy Spirit Catholic Church on Airport Road. The Finnegans moved here from Merritt Island, Fla., three years ago.

There is also talk of a bone marrow testing drive to try to find a donor for Blaise and Madeline, Gibson said. Siblings are usually the best bone marrow donors, but the Finnegans' youngest child, 7-year-old Trinity, is not a match.

The ordeal began in March, when Madeline, now a seventh-grader at Hampton Cove Middle School, went to the doctor because of stomach pain and vomiting. Her pediatrician suspected appendicitis, but tests showed problems with her red blood cells, white blood cells and platelets, Nancy Finnegan said.

Last month, Madeline developed sores in her mouth and throat and was sent to St. Jude for a bone marrow biopsy; she was diagnosed with Fanconi anemia a few days later.

Fanconi anemia is a genetic blood disorder that causes bone marrow failure and often leads to acute myelogenous leukemia. Even after bone marrow transplants, Fanconi patients have an increased risk of developing cancer and other serious health problems.

Blaise, a Huntsville High junior who referees youth soccer and belongs to the Air Force Jr. ROTC, was diagnosed about 10 days ago, after tests to see if he was a bone marrow match for his sister. Neither child appears sick, their mother said, but they will have to avoid contact sports from now on.

Nancy Finnegan said she and her husband, an engineer at the Marshall Space Flight Center, may try to conceive another child through in vitro fertilization who could be a bone marrow match for Blaise or Madeline. Money from the golf tournament would help pay for fertility doctors and related costs not covered by their health insurance.

"The community has been very supportive; it's felt like a family," she said. "It's a blessing to have them in our lives right now."

© 2007 The Huntsville Times