Valley Breeze

The Valley Breeze Cumberland Lincoln 04-01-2021

The Valley Breeze Newspapers serving the Northern Rhode Island towns of Cumberland, Lincoln, Woonsocket, Smithfield, North Smithfield, Pawtucket, North Providence, Scituate, Foster, and Glocester

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CUMBERLAND LINCOLN EDITION | VALLEY BREEZE | APRIL 1-7, 2021 CUMBERLAND 17 CUMBERLAND – As the 2021 Hasbro Children's Hospital Champion Child, 13-year-old Isabelle "Izzy" Mirzaei, of Cumberland, says her message for other kids who have to be admitted to Hasbro is to not be afraid. "It's a really great place," said Mirzaei, daughter of Daisy and Sam Mirzaei, who was born in 2007 with a life-threatening blood disorder called beta thalassemia major, which pre- vents red blood cells from carrying sufficient oxygen to support normal body function. "Hasbro will help you. Don't be afraid to go there." Mirzaei, who recently found out she received this award from Hasbro, also wants kids to know that no mat- ter their diagnosis, it doesn't define them. "You are your own person, and don't let what you have defeat you," she said. When Mirzaei, now a 7th-grader at Blackstone Valley Prep Mayoral Academy, was 1 month old, she made her first visit to the Tomorrow Fund clinic, the hematology/oncology center at Hasbro Children's Hospital in Providence, and at 11 months old she had her first blood transfusion, which she repeated every three to four weeks for the next decade, said her mom, Daisy, who's an adult car- diology nurse for Lifespan. Izzy's youngest sister, Lillian, who was born in 2017, was found to be a bone marrow/stem cell donor match, and Izzy underwent a successful bone marrow transplant at Boston Children's Hospital on Sept. 14, 2018. Today, she is considered 100 percent cured of beta thalassemia major and is living life as a normal teenager, Daisy said. But that 10-year journey was tough for the Mirzaei family. At 2 years old, Izzy had a central line implanted, which made the process of blood transfusions easier. Daisy said the turning point was when Izzy was stuck 15 times for a blood draw, and she was screaming. "I could feel her heart beating like a hummingbird," she said, adding that her heart broke every time they had to go through the process. Around the same time, the fam- ily of three began meeting with a transplant team at Boston Children's Hospital, since Hasbro doesn't have a transplant team. Their doctor there said that because the blood disorder is hereditary, the best chance would be to do a bone marrow transplant. As someone who is half-Iranian and half-Chinese, finding a match would be very difficult, and doctors said the best chance would be to have a sib- ling who's a match. "Minority groups are severely underrepresented (in the bone mar- row registry) and because she is two ethnic groups, it makes it even more difficult," Daisy told The Breeze. Daisy and Sam, a pharmacist, spent years fighting with their insurance com- pany, which wouldn't cover in vitro fertilization since the couple weren't infertile; they were seeking IVF because of the risks of having another child with the same blood disorder as Izzy, Daisy explained. But six years later, she said, she found herself preg- nant again. Their second daughter, Arya was born, and while she did not have the blood condition that Izzy did, she also wasn't a bone marrow match for her older sister. Fast forward another three years, during which time Izzy continued to receive frequent blood transfusions; Daisy was pregnant again. When she was 23 weeks along, the couple's genetic counselor told them that the baby was clear of the blood condi- tion and was a 100 percent match to Izzy, which is a 1-in-4 chance. "I crumpled onto the floor," Daisy said. "I couldn't believe it. Prior to Lilly, I had a miscarriage, and I thought all chances were lost." While they worked with Boston Children's Hospital to prepare for Izzy's bone marrow transplant, "Hasbro was there every step of the way with us. … If it wasn't for Hasbro, Izzy would not have been able to live as long as she did to get to that point. They kept her healthy," Daisy said, adding that Izzy had asked if she could bring her nurses from Hasbro with her to Boston Children's. "Isabelle grew up with Hasbro. … They're family to us." After the transplant, Izzy had a lot of follow-up appointments, with the last one in April of 2020. "She is 100 percent cured," Daisy said. "She has gained weight and height. … She's carried on like nothing ever hap- pened." Izzy says she's been fine and does "normal stuff" such as going to school and playing outside. She's taken vio- lin lessons and dances for the Brae Crest School of Ballet. "The sky is the limit for her," Daisy said, noting that her daughter has dreams of attending Harvard and becoming a pediatrician, specializing in hematology/oncology and bone marrow transplants. Cumberland girl chosen as Hasbro's 2021 Champion Child By MELANIE THIBEAULT Valley Breeze Staff Writer melanie@valleybreeze.com DAISY and SAM MIRZAEI with their children, LILLIAN, 3, ARYA, 6, and ISABELLE, 13. Isabelle, who was born with a life-threatening blood disorder called beta thalas- semia major, has been named the 2021 Hasbro Children's Hospital Champion Child. In 2018, Isabelle underwent a bone marrow transplant surgery, thanks to a dona- tion from her sister Lillian, and is now considered 100 percent cured. 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