Plainville girl's rare disease stresses importance of giving blood

Published on Monday, 24 June 2019 17:55
Written by Karla Santos

@KarlaSantosNBH

NEW BRITAIN - Daniela Ciriello is a typical 6 year old. She is upbeat and outgoing, dances and is part of the University of Connecticut’s Team IMPACT. But Daniela’s life is not typical in one important way. She suffers from a disease that requires her to receive a blood transfusion every three weeks.

Beta Thalassemia, better known as Cooley’s Anemia, is a rare genetic blood disorder that does not allow the body to make enough healthy blood cells on its own.

In honor of Ciriello’s birthday, the American Red Cross, the Devine Providence Parish and St. Joseph Church have partnered to host a blood drive on July 1 which marks Ciriello’s seventh birthday to celebrate her life and collect blood to help her fight her health disorder.

The blood drive will be held at St. Joseph Church, 29 Edson St. from 11 a.m. to 4 p.m.

“It’s going to be a great event,” Ciriello’s mother, Nicole Ciriello said.

According to Ciriello’s mother, when her daughter closes in on her next transfusion, she becomes pale, tired and gets “cranky.”

If she skips a blood transfusion, her risks can go anywhere from having a lack of energy and heart rate increases to having bone deformities. “The longer she goes, the more life threatening it becomes,” her mother said.

Dr. Michael Isakoff, clinical director of the Connecticut Children’s Medical Center, told The Herald that Ciriello’s Cooley’s Anemia is life threatening because she has a transfusion-dependent anemia. She needs the transfusions for her body to sustain life.

According to Isakoff, Ciriello’s blood type, which is O+, is not challenging to find, but the need for blood donors can become a challenge if the blood supply runs low. Ciriello’s condition does not progress, but her body will never be able to make healthy blood cells on its own, Isakoff said.

In addition, Isakoff said that a bone marrow transplant could be a cure for Ciriello’s condition, but he doesn’t recommend it because it is too risky and complicated. He also mentioned that an issue caused by the transfusions is an iron overload that needs to be treated because it could lead to chronic diseases. Isakoff said that because Ciriello can get sick in the long term from an iron overload, a big part of her treatment focuses on helping her get rid of iron.

Ciriello, of Plainville, has been receiving blood transfusions since she was diagnosed with the disorder when she was 14 months old.

According to her mother, she was immediately hospitalized and received seven transfusions in a week when they first found out about her condition.

“It was quite scary,” Nicole Ciriello said.

But a shortage of blood for her daughter is not Nicole Ciriello’s only concern. Ciriello said her daughter is on “a very expensive medication” that helps her control the iron overload, a side effect of the treatment.

Daniela Ciriello takes two pills in the morning and one pill at night. While her health insurance covers the medication, there is still a deductible to be paid. Just in January, Nicole Ciriello said she and her husband, Daniel, had to pay $6,000 up front and out of pocket for a month worth of pills. Ciriello said her daughter’s insurance was recently changed to one that will enable the family to pay less up front for the 6 year old’s medication, which is called Jadenu. Nicole and Daniel Ciriello have three other children who are ages two, 10 and 12. The youngest one also has the same condition, but he does not need transfusions and his condition is monitored every six weeks.

“It’s heartbreaking,” Nicole Ciriello said. “No one wants to see their child got through that. I wish that it was me and not her.”

Ciriello can’t donate her own blood because both her and her husband have the trait that causes Cooley’s Anemia.

Ciriello said she is glad the American Red Cross gets the word out promoting the blood drives. The American Red Cross also provides the volunteers that perform screening and collect the blood from those who are able to donate.

Some groups including the church and a Southington group have held annual blood drives to support Daniela Ciriello.

For more information, visit the Facebook page, Daniela’s Dream for a Cure or the Instagram account, Daniela’s Cure.

Karla Santos can be reached at 860-801-5079 or ksantos@centralctcommunications.com.



Posted in The Bristol Press, Plainville on Monday, 24 June 2019 17:55. Updated: Monday, 24 June 2019 17:58.