Jack Frye perseveres with a smile

The classroom of E-5 has gained a new student, one who is already making an impression on those around him and the school. While Jack Frye, freshman, has a rare disease called Hunter’s Syndrome, he does not let it stop him from being a hard-working, kind, and friendly Panther.

Anne Alvarez, Special Education teacher, has found that Jack has affected her life in many ways, even just in the work of her everyday life.

“He makes me smile, he makes me thankful for what I have and what I can give other people. He really lightens up my life,” Alvarez said.

The freshman’s clinical treatment can often make keeping up with schoolwork difficult, but Alvarez, who has had a student with similar conditions in the past, tries to help where she can.

“Sometimes he doesn’t get his homework done, but [for example] he has treatments on Mondays, so I don’t make him do homework on Mondays,” Alvarez said.

His classmates enjoy the same warmth Jack shares with Alvarez, and she sees them working well with each other. Talkative and always saying “hi” to everyone, Jack has fun with the other students.

But the other kids don’t suffer from the disease that Jack has battled for his whole life. Hunter’s syndrome, also known as mucopolysaccharide II disease, is an inherited genetic disorder that inhibits the production of an important enzyme in charge of breaking down certain materials in the body. People affected by the disease have a build-up of these substances, damaging cells and causing the symptoms Jack feels such as sinus infections, weakness, joint pains, etc. and the hardships he has to go through. Hunter’s Syndrome can result in growth and facial feature irregularities, as well as other neural complications and development delays. Even with his physical and mental difficulties, Jack perseveres and tries to live life normally, not letting anything stop him.

Normal life includes having fun with his sister, Nicole Frye, senior. They enjoy many activities together, including walking their dogs, playing, watching movies and TV, and just hanging out with each other. Usually siblings also may not have nice things to say about each other, but in addition to calling her brother’s humor her favorite thing about him, she repeatedly emphasized what a good person Jack is.

“He is very energetic, and he loves meeting new people, he’s very open. He’s very nice, he’s pretty much willing to do anything. . . He’s a great kid,” his sister said

While she admits that their lives can be very hard and filled with compromise because of her brother’s condition, Nicole believes that her attitude  has also been changed by his condition, something that might not have been the same if she hadn’t experienced living with these ordeals.

“It’s changed my perspective on life, [especially for] living every moment like it’s your last,” the senior said.

As a senior, Nicole plans on going to college in California so that she can stay close to Jack. She thinks that even though it will affect him, he’ll understand why she has to go, and she plans to visit as much as she can.

Jack is an honorary member of the JV football team, enjoys hanging out with his classmates, spending time with his sister, playing with his dogs, and lives life like any other kid. This is something his sister stresses, that Jack and all kids like Jack, are not that different.

“It might be scary to talk to special needs kids, because you never know what to say. But just talk to him, he’s a great kid,” Nicole said.

 

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  1. Pingback: Need a Dose of Inspiration? Read This Heartwarming Hunter Syndrome Story

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