Walk raises awareness for rare neurological disorder

Nearly 500 people took a walk in Eisenhower Park on May 19 to raise awareness for Angelman Syndrome, a rare neurological disorder. Among the many participants was Giovanni Melo, 6, who was diagnosed one week before his second birthday. His parents, Natasha and John, traveled from Buford, Georgia with their two sons in tow to attend the second annual East Meadow walk--an event organized by New York relatives.

Giovanni is a happy boy who loves to play with water and plastic and it was his parents’ perseverance that led to his early diagnosis.

Natasha said she became concerned about Giovanni when he stopped reaching key developmental milestones. Unlike her eldest son, 9-year-old Christopher, Giovanni was unable to hold up his head at six months old and at one year, he still could not sit unassisted.

John added that their pediatrician and the first neurologist they consulted were not helpful. He said it was his wife’s sleepless nights and desire to seek a second opinion that led to Giovanni’s diagnosis.

“I became almost obsessed to find out what happened to him,” Natasha added. “Just the fear had me searching for an answer.”

While Giovanni began physical, occupational and speech therapy seven days per week at one year old, his parents were still lacking answers. Then, one sleepless night, Natasha entered his symptoms into Google and learned about Angelman Syndrome. She requested a blood test and the diagnosis was confirmed.

Similar to autism and cerebral palsy, conditions Giovanni was once misdiagnosed with, Angelman Syndrome symptoms vary in severity and are marked by severe developmental delays, stiff, uncoordinated movements and seizures.

Though unconfirmed by doctors, the Melos believe that Giovanni was having seizures since birth. While their son has been seizure free for four month, the damage caused is unknown.