November
8, 2007 (Richmond Hill, NY) Severino Roberto, a five year old boy
affectionately called Sonny, was born with a birth defect called Prader-Willi
Syndrome (PWS). PWS is a life threatening chromosomal disorder that affects 1 in
15,000. Children with PWS have an uncontrolled genetic drive to eat because
their brain sends signals to them that they are constantly hungry and they run
the risk of eating themselves to death. Babies with PWS are born with failure to
thrive, are hypotonic, (floppy), have small genitals, small hands and feet,
almond shaped eyes, thick viscous saliva, some with hypopigmentation, (very fair
skin), undecended testicles and have very poor suck reflex. They do not grow
normally; therefore, growth hormone shots will need to be given daily. They will
need Early Intervention immediately after birth, and will probably never be able
to live on their own. Children who are born with PWS have to overcome many
physical and health challenges as well. Sonny is a unique little boy. At 5 years
old, he has overcome more obstacles than probably any typical 5 year old with or
without PWS.
Sonny began Early Intervention at two months old. He needed oxygen for the first two years of his life and by the time he was two had acquired pneumonia eight times. He has been hospitalized close to forty times. He has had twelve surgeries for his throat, undecended testicles, and eyes, and eight more bouts of pneumonia by the age of 5. He suffers from Gastroparesis, an ailment that doesn’t allow his stomach to empty causing food to be trapped in his stomach which rots. As a result, the stomach becomes severely distended with food and gas which requires hospitalization. He’s been hospitalized seven times for this alone. He also suffers from seizures, scoliosis, obstructive and central sleep apnea, reactive airway disease, Gastro Esophageal Reflux Disease, asthma and tracheo laryngo malasia which is a floppy airway.
Sonny suffers also from low muscle tone and his metabolism is half that of a typically developing five year old so he needs to be on a low fat low calorie diet for the rest of his life. He will continue having challenges throughout his life, and food will be a constant torment. Throughout all of his obstacles, Sonny has proved to be resilient, and continues to be a loving, sweet funny little boy full of life. Although there is no cure for PWS, there is ongoing research into finding one. For more information, go to www.prader-willi.org .
edited: 11/24/2007