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Red Cross blood drive dedicated to six-month-old

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Tuesday, August 04, 2009

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ONEIDA — Sophia Stagnitta is a happy and easy-going baby, her parents, Scott and Jennifer Stagnitta say.

People who look at her see an energetic six-month-old who seems healthy, though she suffers from a very rare chronic blood disorder that is not easily cured.

Sophia suffers from a disease called Beta-Thalassemia Major, or Cooley’s Anemia, which prevents or greatly reduces the body’s ability to make “adult” hemoglobin and causes anemia. It is a disease that is treated with monthly blood transfusions and nearly daily treatments for removing iron from the blood to prevent an overload. Because of this, the Madison-Oneida Chapter of the Red Cross has chosen to dedicate their annual summer blood drive event later this month to Sophia.

Scott, a teacher in the Skaneateles School District, and Jennifer, a kindergarten teacher at Willard Prior Elementary School in Oneida, are touched by the gesture.

“We’re very honored. It’s very nice of them and very thoughtful,” said Jennifer, whose mother, Linda Pavone, serves on the Madison-Oneida Red Cross Chapter’s board. Chapter Executive Director Susan Tonra said when Pavone first told her about Sophia’s disorder, they thought it would be helpful to dedicate the event to her.

“It’s an opportunity to spread awareness and have people come out and donate, not for Sophia, but in honor of Sophia, to help others,” said Tonra.

As it turns out, Cooley’s Anemia is an extremely rare disorder. Neither Scott or Jennifer knew about it before Sophia was diagnosed 11 days after her birth in February on Friday the 13th.

“It came as such a shock,” Jennifer said.

When they look at Sophia today, it is also shocking that she has this disorder. Her hemoglobin blood count is currently high, since she still has the hemoglobin she was born with.

“That’s the hard part,” Scott said. “Right now, you look and see a happy, very, very healthy girl and we ask, ‘How can she have this?’”

After her diagnosis, the Stagnittas were quick to find out just how rare it is. Scott said only 750 individuals in the United States and Canada have been diagnosed.

In fact, standard blood tests done at birth don’t even include a screening for Cooley’s Anemia, Scott said. It was general blood testing that raised red flags with the Stagnittas’ doctor.

“They found that the shape of her red blood cells were a little different,” he said. Instead of being round, they are more oval shaped and will eventually look like donuts.

The family recently visited Boston to see a doctor who specializes in treating this disease. The road to doing so can be a challenging one, Scott and Jennifer said, but it is a fight they refuse to lose.

“The doctors have been reassuring that she will live a long life, but it will be difficult,” Jennifer said.

Once Sophia’s hemoglobin count goes down, which will happen sooner or later, she will need near-daily treatments to remove iron from her blood and blood transfusions every three to four weeks.

Blood transfusions will be at least a one-day process, Jennifer said, and could take more time for pre-transfusion preparations. There will have to be, and already are, monthly visits to a hematologist in Syracuse. Scott said these procedures may be trying for Sophia as time goes on, but doctors have told them that getting her used to it at a young age and making it seem as normal as possible will help. Still, they know it will be tough at times.

“It hits you pretty hard,” Scott said. “The only way that your child can survive and live a long life is to keep up with these blood transfusions.”

The iron treatments, which are done to make sure she does not have an iron overload because of the transfusions, could take the form of a pill or an injection similar to an insulin pump, Scott said. This treatment must continue over the course of five days a week, for twelve hours each day.

The only possibility of curing the disorder is with a bone marrow transplant from a sibling. Jennifer said since Sophia is an only child right now, that would be impossible, but they hope to have more children in the future.

Doctors have already told the Stagnittas that it is a procedure best done when a child is younger and will require a lot of recovery time, as Sophia would have to miss at least a year of school if she was of that age. But this is a decision that will have to be made in time and perhaps between now and then, there may be some technological developments.

“Right now, it’s just a waiting game,” Scott said.

But Jennifer said she is looking forward to the Aug. 14 Red Cross blood drive dedicated to Sophia, because of the awareness it will bring.

“It’s important to raise awareness,” said Jennifer. “This gets the word out to people who may not have thought about it before.”

The Red Cross holds this blood drive in the summer, as there is a particular need to replenish the stock at this time of year. Past drives have been dedicated to triplets Ajay, Mattie and Aidan Hicks, two of whom received blood transfusions shortly after birth, and Oneida Firefighter Mitch Dryer, who was severely injured while fighting a fire at City Lanes in Oneida.

Tonra said this year’s goal for regular blood and double red donations is higher than in years past and she is hopeful the Red Cross will be able to meet it.

“We just hope people come out to support the blood program for the Red Cross, but also for little Sophia,” Tonra said.

People who donate blood at this summer’s drive will receive a coupon for a half gallon of Friendly’s Ice Cream. The drive will run from noon to 6 p.m. on Aug. 14. People who are interested in scheduling an appointment should call Jennifer Stagnitta at 627-0365.

© Copyright 2009 The Oneida Daily Dispatch, a Journal Register Property. All rights reserved.

Author: By Lynn Collier
Source: The Oneida Daily Dispatch
2.11111111111
2.1 from 9 votes
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