Walk for Neil Raises $10K for Rare Syndrome Research

About 125 people raised $10,000 for the Rett Syndrome Research Trust (RSRT) at the second annual Walk for Neil on Saturday, May 4.

This is the walk's second year. Both events took place at Cougar Field. The 2012 Walk for Neil raised over $8,000 to research and find a cure for MECP2 Duplication Syndrome, a syndrome which Neil Hajjar, now 2-and-a-half years old, was diagnosed with when he was 9 months old.

Meg Hajjar said, "Saturday turned out to be an amazing day with absolutely perfect weather," with over $9,000 raised at the walk and more donations received after the event.

Hajjar is a Chatham native and graduate of Chatham High School. Her husband Michael is an employee of the Chatham Township Department of Public Works.

MECP2 Duplication Syndrome is a rare disease which causes low muscle tone and delayed development especially in motor skills and speech. The syndrome affects mostly males, though females are starting to become more susceptible.

"Eventually they all develop seizures, obviously hopefully later rather than earlier," Hajjar said. "With the seizures usually comes regression, either due to the seizure or the medications, but there are some pretty serious side effects."

Respiratory ailments are also common among those with the disease. "Without breathing treatments they can't cough at all," Hajjar said. "For us, that's so simple, but something as easy as clearing our throat, we don't realize what it takes."

Those affected also have gastro-intestinal problems and compromised immune systems, making it more difficult to recover from illness. The most common cause of death among those with MECP2 Duplication Syndrome, Hajjar said, is pneumonia.