Jim and MaryAnn Raccosta had plans. They were going to quit their jobs, sell their home on Eldridge Avenue in Lawrence, and set up a bed-and-breakfast inn somewhere in Virginia.
By Lea Kahn, Staff Writer
Jim and MaryAnn Raccosta had plans.
They were going to quit their jobs, sell their home on Eldridge Avenue in Lawrence, and set up a bed-and-breakfast inn somewhere in Virginia.
”I would make breakfast and Jim would make dinner,” Ms. Raccosta said. Her husband had quit his job as a financial analyst for a bank in New York City to attend culinary school, and was working at a bookstore as a customer service representative.
The Raccosta family included their daughter, Gabrielle. But then their son, James, was born in 1999, and their plans flew out the window. That’s because James was born with a rare liver disease and an even more rare metabolic disorder. Their second son, Sam, also has the same metabolic disorder.
The Raccosta family’s trials and tribulations over the next 10 years are outlined in Ms. Raccosta’s book — “The Survivor, The Hero and The Angel.” The author, who lives in the same house where she grew up on Eldridge Avenue, spoke about her book June 27 at the Lawrence Branch of the Mercer County Library System.
”My two sons have (the same) rare metabolic disorder — trifunctional protein deficiency,” she told the small audience. “That’s what spurred the book. We were constantly at the Children’s Hospital of Philadelphia (for treatment). While I was sitting in the hospital room one day, wondering if the boys would live or die, I began writing questions to the doctors.”
The doctors discovered that James had trifunctional protein deficiency — one of a handful of cases known worldwide — while the infant was undergoing a liver transplant. The illness is the result of two recessive genes — one carried by the mother and one carried by the father — that come together. Their daughter, Gabrielle, is unaffected.
Once James and Sam were home and their medical conditions had stabilized, Ms. Raccosta said, it occurred to her that perhaps her experiences would make “a good story.” She wanted to “capture the whole event” — from the medical aspect to the human aspect.
The book begins when James is discharged from the Children’s Hospital of Philadelphia and then “snowballs” into a story about family and friends, and dealing with life with two catastrophically ill children, Ms. Raccosta said.
There is no cure for the disease, she said, adding that after the boys were diagnosed, “my life stood still.” The family spent James’ first Christmas and New Year’s Eve at the hospital. Birthdays and anniversaries came and went, she said.
But the Raccostas made certain to let Gabrielle know that while her brothers required more attention, they loved her. Ms. Raccosta said “we never missed a beat in Gabrielle’s life.” She never missed her daughter’s ballet programs or her birthdays, adding that she and her husband would take turns caring for James and Sam.
There were times when James was close to death, she said. He suffered cardiac arrest, and the first liver transplant was rejected.
Once Ms. Raccosta decided to write the book, it took four years to complete. It began as excerpts and memoirs of the family’s experiences at the hospital, and evolved into the 287-page book that was published last year.
The book recounts the medical side as well as the human side of the Raccosta family’s experiences — the ups and downs of life with James and Sam, and the impact on family life. When the family would arrive home after one of the boys was discharged from the hospital, there were mounds of laundry to do and piles of unpaid bills to handle.
But through it all, Ms. Raccosta said she wanted to assure Gabrielle that she was loved. Her daughter is part of the reason that she wrote the book — to let her daughter see that she is as much a survivor as her brothers. She was 4 years old when James was diagnosed with the disorder.
Gabrielle, who graduated from Notre Dame High School and who will attend Montclair State University in September, does not view her brothers as disabled, Ms. Raccosta said. She has developed compassion and understands the differences between people.
James, meanwhile, is cognitively impaired, Ms. Raccosta said. He is aware of his environment and he smiles, but he cannot speak. He will attend Mercer High School, which is part of the Mercer County Special Services District for special needs children.
Sam is wheelchair-bound, and is entering 8th grade at Lawrence Middle School.
”While I was writing the book, people would ask me, what is the book about. Is it about me, is it about the boys, about the family, about love? It’s really about hope — to keep moving forward, accept what life is and take the next step,” she said.
Ms. Raccosta pointed out that James and Sam have survived, and her marriage is intact. The divorce rate is high for families that have chronically ill children, she said, adding that she and her husband will celebrate their 20th wedding anniversary in September.
Ms. Raccosta said her religious faith, her family and her friends helped to sustain her.
”I knew life was meant to be lived. I just never knew death would be knocking at my son’s door every day. You can’t say, ‘What if tomorrow will bring X, Y or Z.’ The hospital staff said to live in the moment,” she said.
”Hopefully, this book will inspire other people who have had a tough time. They will gain some confidence and courage to accept what has happened in life and the courage to take the next step,” Ms. Raccosta said.