Robert Amato, 11, recently received a grim diagnosis from doctors, and had to spend the holiday season in a hospital bed, but it didn’t stop the Island Park community from rallying to give him a Christmas to remember.
“People stepped up, and it was so amazing,” said Maggie Moran, who started a collection for Robert, a classmate of her daughter Grace’s before he got sick. “We received so much, and people kept dropping gifts to my house.”
Robert has been at Cohen Children’s Medical Center since November. A biopsy last month determined that he has Alexander disease, a rare and often fatal disorder of the nervous system. There is no cure for the condition, and Robert now types on his phone to communicate because he can no longer speak after doctors installed a tracheostomy tube to help him breathe.
Robert started feeling the effects of the disorder three years ago, when he stopped eating and doctors told his parents, Roberta and Salvatore, that they believed he had a psychological eating disorder. In an attempt to get him to eat, Robert underwent therapy, endured feeding tubes to nourish his body and was given medication, but nothing worked.
As a last-chance intervention, Roberta took her son to a specialized hospital for eating disorders in Virginia. While there, he became ill and suffered respiratory distress, and was transferred to the Virginia Children’s Hospital, in Richmond, Va., where he was placed on a ventilator to combat pneumonia. After nearly three years of battling a mystery illness, doctors at the facility decided to give Robert a CT scan, which revealed a tumor on his brain stem that hindered his ability to swallow.
“We kept being told it was just mental,” Roberta said. “We were trying to figure out what we were doing wrong. He had been very stressed and had a lot of anxiety from everyone pressuring him to eat or yelling at him and punishing him for not eating.”
Robert would be in sixth grade at Lincoln Orens Middle School, but his illness has forced him to miss significant class time. He has been tutored at the hospital.
In November, Robert was transported to Cohen, where he was placed on a ventilator in the intensive care unit to help him breathe. Because of the tumor’s location on his brain stem, it is impossible for doctors to operate on it because the stem controls his bodily functions.
In the wake of his diagnosis, Moran spearheaded an effort to bring Christmas to Robert at the hospital by collecting donations of gift cards, toys and other goods in the hope of lifting his spirits. “I was looking for things we could present to him for Christmas,” Moran said. “It’s so hard this time of year with everything they’re going through.”
The Island Park community rallied around Robert. Parents of students in the sixth grade class got involved, donating toys, Amazon gift cards and other items. The collection began on Dec. 15, Moran said, and her house was soon flooded with donations. Local Girl Scout troops also sent Robert hand-written cards, as did the entire sixth-grade class.
In addition, the Island Park-based Eddie’s Sports N Fitness teamed with the Dorothy Finn Foundation to purchase the items on Robert’s Christmas list. The Dorothy Finn Foundation is named in honor of a late lifelong tap dance teacher and dog rescuer who lived in Long Beach for over 40 years. Tara Byrne, who works with Roberta at the Island Park-based Hastava Insurance, also created a GoFundMe page to help the family with medical costs, which had raised more than $37,000 toward its $40,000 goal at press time. She described Robert as a “cutie pie” who was always a nice child, with a fondness for Legos.
Eddie’s also donated the proceeds from its annual Christmas party raffle fundraiser to the cause. This year, they raised $1,100 — more than double the amount they have garnered annually in the past. The Dorothy Finn Foundation also hired someone to take care of Robert’s dogs, Peanut and Ozzy, and his cat, Molly, and bought him toys, including Legos and Hess trucks.
“We found out about it on Facebook,” said Nora Kelleher, the foundation’s president. “My foundation runs an annual Finn Fest event and takes the money to donate it to kids who want to pursue music and art, as well as animal rescue groups, so this kind of fell into our wheelhouse.”
Though his prognosis is not good, Roberta said she is in contact with doctors in Philadelphia and Wisconsin who have treated children with Alexander disease in the past. Roberta described her son as a smart child who loves to build and enjoys computers and robots, and expressed her gratitude toward the Island Park community.
“I feel very grateful, and I’m amazed at how everybody came together for us,” she said. “Robert misses school and his friends. He wants to go back to school.”
Moran praised the Island Park community for coming through for a resident in need, and said she was pleased to be able to bring him presents. “We’re really happy that we could do a little something to let them know that they’re cared for,” she said, “and to maybe put a smile on Robert’s face.”
The GoFundMe page for Robert can be viewed at bit.ly/2LCAFtl.