Ridgefield teacher raises funds to fight Fragile X syndrome

Walkers against Fragile X Syndrome were from left to right: Rajat Sarup, Ari Sarup, Megan Calderwood, Nikki Hardman, Karin Petrini, Shannon Harvey, Emily Grant, Robin Westman, Ginette Howard, Stephanie Sarup.

Walkers against Fragile X Syndrome were from left to right: Rajat Sarup, Ari Sarup, Megan Calderwood, Nikki Hardman, Karin Petrini, Shannon Harvey, Emily Grant, Robin Westman, Ginette Howard, Stephanie Sarup.

Contributed photo

Remote learning; hybrid learning; in school one day, classes over the Internet the next — education isn’t easy amid the COVID-19 pandemic.

And it can be an especially daunting for students with special needs and their families.

But tough times are when people — including some Ridgefield educators with big warm hearts — really shine.

“They clearly go beyond the call of duty,” Stephanie Sarup said of two East Ridge Middle School educators who have been helping her son, Jordan.

She described the difficulties the pandemic has presented for Jordan, who has a genetic condition known as Fragile X syndrome.

“Those with Fragile X thrive on structure and routine, so this new fluid state during COVID has been challenging for him,” she said.

“When he’s remote, it’s difficult for us because he requires constant assistance, and my husband and I both have demanding careers.”

Sarup is grateful for the efforts of Jordan’s special education teacher, Nikki Hardman, and his full-time paraprofessional aide Robin Westman.

The two “have enabled him to become his best self, due to their tireless efforts day in and day out,” she said.

She wasn’t kidding about above and beyond the call.

Hardman “approached us asking if she could organize a fundraiser for Fragile X Syndrome,” Sarup said. “Considering everything going on in a teacher’s world right now, our family was both surprised and overwhelmed by her thoughtfulness and generosity.”

In addition to Hardman and Westman, staff members Karin Petrini, Shannon Harvey, Megan Calderwood and Ginette Howard — representing not only East Ridge, but Ridgebury School and Ridgefield High School — took part in the fund-raising walk on Sunday, Sept. 27.

They were joined in the walk by Jordan, his younger brother Ari, a fifth grader at Veteran’s Park, and their parents, Stephanie and Rajat Sarup.

The effort raised over $1,100 for the National Fragile X Foundation. Hardman earned second place nationally for an individual with the most donors.

The fundraising link is still open: https://give.fragilex.org/fundraiser/2853473

In school learning

Stephanie Sarup also lauds the school system for letting Jordan attend East Ridge even when most students are out of the building, learning from home.

“Jordan thankfully has been able to attend school full-time while the other kids are remote, allowing him to receive his therapies in person by accredited, certified professionals instead of being delivered by me,” Sarup said. “... Fortunately, he was invited back full-time last week by the principal while the school was still 100% remote.

“Ridgefield’s Intensive Special Ed (RISE) Program is small, and at ERMS there are only 3 RISE students with two huge classrooms, so there’s plenty of space to safely distance.”

The National Fragile X Foundation, which is benefiting from the funds raised by the walk, serves anyone living with Fragile X syndrome. It supports research for treatments and a cure, as well as community awareness.

100,000 affected

An inherited intellectual and developmental disability Fragile X syndrome affects an estimated 100,000 Americans. An estimated 1.5 million Americans have the gene premutation which can cause the syndrome.

For several years the Sarup family has been advocating for federal funds to study and battle the condition. Their efforts have led Congressman Jim Himes, who represents Ridgefield, to join the Congressional Fragile X caucus.

“Our advocacy efforts in D.C. over the past few years have secured over $400 million in federal funding for Fragile X research and programming and establishment of ABLE Accounts, which allowed the creation of tax-deferred savings accounts for adults living with disabilities, similar to 529 college savings accounts,” Sarup said.

Sarup added that the family was featured recently in Ridgefield Magazine for their Fragile X awareness efforts and “traveling the world and raising money for a cure.

“One of Jordan’s favorite things to do is travel,” she added. “He loves trying new foods, and he loves listening to foreign languages.

“Attention of any kind often creates anxiety and is a hallmark challenge for those with Fragile X Syndrome,” she said, “so while running an errand in town and bumping into someone you know usually always launches him into fight or flight mode, wandering the streets of a new town where no one knows who you are is his safe space.”