Newest Ridgefield youth football coach is teen with rare genetic condition and passion for the sport

Starting Aug. 15, the Ridgefield Youth Football team welcomed Ridgefield ninth grader Jordan Sarup (in back on right) onto the team. Jordan was asked by the team's coaches to help referee and coach the team during its practices this fall.

Starting Aug. 15, the Ridgefield Youth Football team welcomed Ridgefield ninth grader Jordan Sarup (in back on right) onto the team. Jordan was asked by the team's coaches to help referee and coach the team during its practices this fall.

Stephanie Sarup / Contributed photo

RIDGEFIELD - As his younger brother Ari, 11, takes to the playing field this fall, Ridgefield student Jordan Sarup, 14 will be helping coach and referee the Ridgefield Youth Football team at their practices.

A rising ninth grader at Ridgefield High School, Jordan was diagnosed with a rare genetic condition called Fragile X Syndrome at the age of 5.

One of his latest interests has been attending Ari’s travel sports games. Ari plays basketball in the winter, lacrosse in the spring and Ridgefield Youth Football in the fall.

At Ari’s football games, Jordan closely observes the coaches and referees. After coming home from the games, Stephanie Sarup, Ari and Jordan’s mother, said Jordan pretends to referee and coach. He has every color whistle, which he wears around his neck, based on what he sees on the field on any given day. She said Jordan also noticed how the referees wear badges and whistles at the games — two accessories he enjoys wearing himself.

Sarup said the Ridgefield Youth Football team’s coaches approached her to ask if Jordan would be interested in helping them coach and referee the team during practice and invited him to sit down with the players for a pizza dinner after practice.

Remarking on how the coaches have strived to include Jordan on the team, she said, “They’re very inclusive: they call it a football family where it’s not just the players; it’s the players’ families.”

“It means a lot,” Ari said of the coaches’ inclusiveness. “I’m glad they understand he wants to do certain things and they’re going to let him do those things.”

Football practice started Aug. 15, and will run for two weeks, during which time Jordan will get to help coach and referee.

After their practice on Aug. 18, Sarup said the team took a knee while she and Ari talked to them about Fragile X and how it impacts Jordan and his behavior. They also gave Ari’s teammates an opportunity to ask questions, and Sarup praised them for being receptive.

Fragile X

While Fragile X is considered a rare genetic condition that causes severe intellectual disabilities, Sarup said it’s not rare to carry the gene. While Jordan has the syndrome, she carries the genetic mutation, which puts her at risk for other conditions.

The Sarup family of Ridgefield have been working to raise awareness around Fragile X Syndrome in their local community.

The Sarup family of Ridgefield have been working to raise awareness around Fragile X Syndrome in their local community.

Kaitlin Lyle / Hearst Connecticut Media

“The high-level overview is essentially that his body isn’t producing a protein called FMRP necessary for proper growth and development,” Sarup explained, “and an important function of this protein is to help regulate the nervous system. Therefore, their biology is in a state of dysregulation, and he is often in fight or flight mode.”

Sarup said Fragile X isn’t a degenerative condition and that people with FXS have a normal life expectancy, adding, “It’s a lifelong challenge, but it’s not a medically lifelong challenge.”

As for Jordan, Sarup said her son is aware of his condition but doesn’t think about it “in the same way that you or I would.

“He’s just a pretty happy-go-lucky, living-in-the-moment person, which is a blessing of the condition because it keeps us all present,” she said. “He wakes up bright-eyed and bushy-tailed every morning. He’s just perpetually happy when he’s not impacted by what’s going on.”

At school, Jordan is enrolled in the Ridgefield Intensive Special Education (RISE) Program designed for students with the most complex learning profiles. Sarup explained the RISE Program tailors its entire education plan to whatever students’ needs are, meaning “they usually have a multi-faceted approach due to numerous academic and behavioral challenges versus a student that perhaps only has ADHD or dyslexia.”

Jordan’s team through the RISE Program is comprised of seven specialists, including a special education teacher, a paraprofessional, an occupational therapist, a physical therapist a board-certified behavior analyst, a speech language pathologist and a psychologist. Through their work and a tailored academic plan, Sarup said her son has flourished from being non-verbal at 5 years old to being verbal, reading, writing and learning how to calm himself down.

Cooking, languages, routines

When he’s not coaching his brother’s team this fall, Sarup said Jordan loves traveling and listening to languages; he’s anticipating taking Italian classes at the high school this fall, in addition to Spanish.

Among his other interests, their mom Stephanie Sarup said Jordan can often be found cooking in his family’s kitchen, whipping up meringue before school as a therapeutic output. She added he prefers baking over cooking and while he consumes a variety of cooking videos on YouTube, he prefers to cook based on what he’s watched rather than follow recipes with precise measurements.

Though Jordan finds comfort in having a daily routine, Sarup said he can be flexible, such as when he’s on vacation. He attends school yearround, including five weeks in the summer . Even during the COVID-19 pandemic, Sarup said he attended school where he received the hands-on therapies he requires.

Looking ahead

Regarding Jordan’s future after high school, Sarup said the district starts having discussions as early as eighth grade. She said Jordan will stay in the Ridgefield school system until he’s 21, after which time he’ll likely be placed in a job with an aide. Job placement would be based on what his interests are at the time. Right now, Sarup said Jordan’s interested in working at CVS.

Reflecting on her concerns about Jordan’s future, Sarup said, “We’re just concerned long-term because he’s going to need supports for the rest of his life barring any treatments that are found, so as long as we’re around, I suppose we’re not concerned, but you never know when your number’s up.”

Given how rare Fragile X is and how unfamiliar people are with the condition, the Sarup family has worked to raise awareness about the condition. Attributing the National Fragile X Foundation as her family’s lifeline, Sarup said her husband Rajat serves on the Foundation’s board and she does a lot of work with the organization. The Foundation has also organized for the Sarups to visit Washington, D.C., every year to advocate on Capital Hill, to raise raising awareness for Fragile X.

Through their involvement with the Foundation, Sarup said her family knows hundreds, perhaps thousands, of families who have someone with Fragile X in their lives, who are carriers of the gene and who have been impacted by the many ways in which the gene has manifested itself.

“It definitely helps us because you have a sounding board you can leverage,” Sarup said of connecting with other FXS-impacted families. “You can ask them anything — they’ve all gone through the journey already.”

As she and her family continue to raise awareness around FXS, Sarup said, “I just want them to know that there’s an individual in the community that has this condition… and I just want them to be aware first and foremost and then just to know that they can be themselves and be friendly… Studies have shown that everyone’s life is richer when we are around people that are different from us.

“Everything shows that his life is more fulfilling and richer and their life is more fulfilling and richer when we’re exposed to one another,” Sarup said.

Sarup voiced her appreciation to the Ridgefield community for its support toward her family.

“We’ve raised $75,000 based on this community alone,” she said, “which is just a testament to how many lives Jordan’s impacted.”