Eight-year-old Rebecca Marcinauskis’s daily life includes meeting with up to 10 specialists, hospital visits and challenges that most people can’t imagine.
Rebecca was born with a rare chromosome abnormality — only three cases have been reported worldwide — and that has led to several medical issues. But despite all of it, her mother, Laura Marcinauskis, says Rebecca is “feisty” and “happy go lucky.”
“You look at this child, you’d never know all that she faces — she tries to keep up with everybody else,” Marcinauskis said. “She is the bravest little girl I know.”
She has had 20 hospital stays since birth and recently had her 51st MRI/CT scan. Rebecca is facing critical brain surgery soon. She has hydrocephalus, or fluid on the brain, and the back of her brain is growing into her spinal cord.
She also will need a hip replacement because of Legg-Calvé-Perthes disease. Rebecca, who receives speech therapy, can say about 800 words and knows about 600 signs.
“We have major surgeries pending; it’s humbling,” her mother said.
Also humbling is support from people in the Shelton community, who have planned a fund-raiser for the family, she said. The Beccaroni pasta dinner is planned for Friday, Jan. 18, 6:30 p.m., at St. Margaret Mary Church Hall, 380 Long Hill Avenue.
One of the most difficult aspects for the Marcinauskis family has been trying to get insurance to cover medical expenses and get Rebecca the care she needs. It’s been a constant battle, her mother said.
“You’re not only fighting to keep a child alive but you realize that society as a whole doesn’t know what to do with these kids,” Marcinauskis said.
The family has paid about $75,000 in medical expenses the last eight years and $13,000 in copays alone. Marcinauskis works full-time and has three jobs, and the family still struggles to make ends meet.
Marcinauskis said the efforts of friends and people in the community to organize a fund-raiser is moving.
“When people hear the story and realize the challenge after challenge, and decide they want to do something to help, it’s really humbling,” she said.
The pasta dinner fund-raiser Jan. 18 will feature entertainment by teens from Center Stage Theatre as well as a raffle throughout the evening.
The suggested donation for the event is $10 and children under 4 will be admitted for free. For tickets, call Sheila at 203-924-9269.