Walk For Neil Returns to Cougar Field Saturday

Meg Hajjar is a Chatham native, a graduate of Chatham High School. Her husband Mike is an employee of the Chatham Township Department of Public Works. So when they decided to hold a fundraising event for the Rett Syndrome Research Trust (RSRT), there was only one place to go.

The second annual Walk for Neil will take place at Cougar Field from 2 to 5 p.m. Saturday.

The Hajjars have learned a lot since the first walk in 2012, when 100 people raised about $8,000 for RSRT. At the time, Hajjar was pregnant with her daughter and had two twin toddler boys to take care of, one of whom, Neil, was diagnosed with MECP2 Duplication Syndrome when the boys were 9 months old.

MECP2 Duplication Syndrome is a rare disease. "The doctors here, Neil is their only patient with this syndrome," Meg Hajjar said. For the most part, she looks to a Facebook support group with members from the U.S.s and abroad with family members who have the disease. "I tend to look to these parents for medical and emotional advice," she said.

The syndrome 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.

"Winter is a very serious time," Hajjar said. "We were very lucky, Neil only had bronchitis once this year, and we were worried because his twin brother started school this year."

Neil transitioned into home care this year, which the Hajjars hope will be an avenue for more people to come to this year's walk. "Our goal is more than last year," Meg said, for both the number of people who come and the funds they hope to raise. "We already have over $800 in donations in the mail so far. It helps having our address on the flyer so people can just send in donations if they can't make it to the walk."

Saturday's walk is the culmination of months of work by the Hajjars, but one with unending inspiration coming from their son. "He finds joy in the littlest things. I forget sometimes he's disabled, because to me he's just Neil. He just reminds my husband and I of all the little things that it's so easy to take for granted," Meg said.