Six-year-old must battle constant hunger

Six-year-old Sonny Roberto is ravenous nearly all of the time, but it is not because the Woodhaven child does not get enough to eat. Sonny, whose real name is Severino, was born with Prader-Willi Syndrome (PWS), an illness affecting between one in every 12,000 to 15,000, according to the Prader-Willi Syndrome Association (PWSA).
As a result, Sonny is constantly hungry and yet his metabolic rate is about half that of his peers, meaning he must eat much less than other children to stay at a healthy weight even though he feels starved for food.
“I could feed him 24 hours out of the day and he will eat 24 hours out of the day,” said Sonny’s mother Nina.
In addition to needing oxygen to breathe for the first two years of his life, Sonny has had 17 cases of pneumonia, 12 surgeries and more than 35 hospital stays since he was first diagnosed at 10-days-old.
“At the time none of them [doctors] really even knew if it was Prader-Willi, what his prognosis was. You know I even asked if he was going to live or die and they didn’t even know if he was going to survive. It was heart wrenching,” said Nina. “And the information that is on the Internet is so scary.”
On the web, informational sites about PWS, a disorder of chromosome 15, tell of those who become morbidly obese or gorge themselves, which is a serious health risk because the stomach lining of children with PWS is often thinner than normal, so it’s much easier to rupture the stomach.
“Children with Prader-Willi can literally eat themselves to death,” Nina said.
But the Robertos have developed a system to make sure that Sonny, who is now height- and weight-proportionate, gets the nutrition that he needs - locking the kitchen with a wooden gate at night, putting food out of reach, hiding junk food from his view, and setting a timer between meals.
In addition, Sonny takes growth hormone and undergoes both physical and occupational therapy in school, rigorously working his muscles.
“We try to walk to the park, instead of drive. We try to get him out so he is not so preoccupied with food. We try to keep him active, but sometimes that doesn’t work,” Nina said, explaining that Sonny will break down, scream and cry if he isn’t satiated.
“He will say things like, ‘Mommy, I’m starving.’ … It just breaks my heart, but I know if I give in, it’s only going to hurt him.” Nina said.
Most recently - within the past few weeks - Sonny had started sneaking food. He snatched three or four regular yogurts from the fridge - even more of a problem because he is allergic to dairy and eggs - and gobbled them down before his parents found him.
The Robertos, including dad Thomas, 15-year-old sister Niyani and four-year-old brother Lennon, worry that Sonny will continue to test the limits of what he can eat until he makes himself very sick.
When he does eat much more than the 1,000-calorie-a-day regimen planned out for him, Sonny cannot digest the food and it rots within his stomach, forcing him to be hospitalized with an IV until his stomach empties.
“It’s happened so many times that it’s almost like a cycle. He knows if he eats too much he is going to get sick, and he has been in the hospital enough times that he knows that’s going to happen. I’m not bluffing as a mom,” Nina said.
When asked about his hospital stays, Sonny innocently said, “I don’t want to stay in the hospital, not at all.”
In addition, Sonny is much more susceptible to illness and injury, bruising frequently without feeling much pain. Because his body can’t regulate its own temperature, the shy little boy must wear a jacket to go outside for a school fire drill, and in the summer time, he can’t spend too long in the hot sun.
However, Thomas’ insurance covers most of Sonny’s treatments - what isn’t, is paid for with a Medicaid waiver. Plus Sonny does not seem to have the developmental delays often associated with the illness.
“He understands everything, He is reading now. He is doing really well, but he needs a smaller class setting, because he gets distracted easily, especially when he has seizures,” Nina said, explaining that Sonny has up to 100 “absence” seizures per day.
Later in life, the Robertos expect Sonny to live in a group home so that his weight remains under control.
“These kids, into adulthood, they never feel full, even knowing what they have,” Nina said, adding, “One adult described it as piranhas gnawing on his stomach.”
To educate the community about the syndrome, Roberto organized the first-annual Prader-Willi Syndrome Walk-a-Thon, scheduled to start at 1 p.m. on Sunday, May 18 at Victory Field, located at Myrtle Avenue and Woodhaven Boulevard in Woodhaven.
Nina, who recently signed on to work as the Executive Director for the Niagara Falls-based Prader-Willi Alliance of New York, Inc., now counsels parents of PWS kids and hopes to spread awareness about the “rare” illness.
“Statistically, there are only six or nine registered children with Prader-Willi in Queens,” Nina said, noting the amount of borough residents exceeds 2 million. “You know that there is something going on there as far as awareness. There are children who have probably fallen through the cracks.”
Registration for the walk will begin at noon, and those who wish to find out more information or sponsor a walker should contact Nina or Thomas Roberto at 718-846-6606.