Blood drive benefits Down syndrome children
By Mike Nolan email@example.com April 17, 2014 6:48PM
Rennay Fullilove (right) prepares to have blood drawn by LifeSource donor specialist Bridget Simmons on Thursday at Hope Montessori School in Tinley Park. Fullilove, of Hazel Crest, is part of Down in the Southland, a Tinley Park-based organization of parents of children with Down syndrome. | Mike Nolan~Sun-Times Media
Updated: May 19, 2014 2:24PM
Easter is going to be a bit different this year for 11-year-old Natalie De Nova.
The Tinley Park girl is scheduled to undergo her seventh heart surgery on Monday, and having a big family gathering Sunday is too risky, her mom, Juliette De Nova, said. Even a mild case of the sniffles shared by another family member could get her bounced out of the operating room.
On Thursday, friends rolled up their sleeves and donated pints of blood for Natalie as well as 3-year-old Bryce Bartczak. Both children have Down syndrome and both require blood transfusions for other health problems.
Bartczak, of Manhattan, was diagnosed in January with leukemia and gets regular transfusions of platelets, plasma and red blood cells.
“He is the sweetest little guy in the world. He has the greatest sense of humor,” Meghan Muckian, the boy’s preschool teacher, said before donating. “I wanted to do anything I could to help him.”
The boy was enrolled in her preschool class in September, but since his diagnosis she has been teaching him at his home because he’s too medically fragile to be in the classroom, Muckian, of New Lenox, said.
“He will definitely put a smile on your face,” she said.
Rennay Fullilove, of Hazel Crest, wanted to donate to help both Bryce and Natalie. The mom of a son with Down syndrome, she is part of a Tinley Park-based group, Down in the Southland, which was organized to help support parents like her.
Juliette De Nova is the group’s president, and Fullilove said De Nova reached out to her and helped calm her fears after the birth of her son, Christian, almost two years ago.
“She kept telling me he’s a normal kid,” Fullilove, who has three other children, said. “She kind of helped stop my tears.”
Down in the Southland, among other things, arranges play dates for parents’ kids, and Fullilove described De Nova’s daughter as “the happiest little girl, and so outgoing.”
Natalie De Nova was diagnosed at birth with a congenital heart defect. Her mom said that nearly half of children with Down syndrome have some type of heart defect.
The girl had multiple heart surgeries before she was 21/2, including having a pacemaker implanted in her chest. Monday’s surgery will replace, for the second time, a valve in her heart, and surgeons will repair her pulmonary arteries, Juliette De Nova said. The surgery will be done at Advocate Christ Medical Center in Oak Lawn, where Natalie went Thursday for presurgery tests.
All of her previous surgeries took place when she was too young to realize what was happening, so this trip to the OR will be different, her mom said.
“She’s nervous,” she said. “All these people in your face, with masks on.”
While the big family gathering won’t be part of the holiday Sunday, Natalie will have a surprise waiting for her. Juliette said her daughter gave up chocolate for Lent, and her Easter basket will be stuffed with chocolate bars and other treats.