PubFest 2011 highlights a community cause

by Amy Young

Special to the Sentinel

Becoming involved in the Variety Kids Telethon not only changed the lives of the Village of Lewiston's Theresa Kopasz and her family, but also the lives of thousands of children and families throughout the Buffalo area.

Theresa is the mother of 10-year-old Sarah Kopasz, who lives with a rare disorder called XQ 26, 28 duplication. Sarah is the only recorded female with this disorder, which is only known to touch males. The disorder not only affects her growth, but also her muscle tone and learning ability.

Sarah is a regular patient at Women and Children's Hospital, where she has scans every six months to be sure that the growth hormones she receives daily are not producing cancerous tumors on her kidneys. Sarah's doctor is like family, treating her since 2004.

In 2009, Sarah went through an eight-week, painful therapy in order to have her feeding tube removed, allowing her to eat on her own. Every surgery and each step forward is exceeding the expectations doctors made for Sarah when she was born in 2000.

Moving to Lewiston from Las Vegas, due to a job transfer of Sarah's father, David, was a gift to the Kopasz family. Theresa's family members, who are residents of Lewiston, added great convenience to her life when the family made its move. With all the doctors' appointments and extra attention needed for Sarah, as well as the physical and mental toll of having a child with disabilities, Theresa found comfort in moving close to relatives and friends.

Not only did the move give Theresa a few extra helping hands, but it also led her to Women and Children's Hospital. Theresa believes "Sarah wouldn't be where she is today if it wasn't for Children's Hospital ... and the (Variety) telethon."

Theresa also grants Sarah's success to "the Village of Lewiston and especially Lewiston Kiwanis."

This past year, the Kiwanis Club donated proceeds from the Peach Festival Fun Run to the Make-A-Wish Foundation in honor of Sarah. Make-A-Wish granted Sarah's wish in 2007, allowing her to meet the cast of "High School Musical 3."

The Village of Lewiston has embraced Sarah and made her its own. After meeting the ever-smiling, full-of-life, 10-year-old girl, one understands why the community has made her a part of the family. You wonder, though, how such a young girl who has been through so much in life is so joyful. Her mother explained that Sarah never looks backward at what she's been through.

"She always looks forward, even though she knows she's going to have to go through something scary," Theresa said.

To get her over the hurdles and hard times, Sarah's parents always try to give her something to look forward to, whether it's an upcoming Taylor Swift concert or collecting sea glass, which is her favorite thing to do (and favorite thing to show off).

While visiting Sarah, she was filled with excitement to show off her collection of sea glass, which she and her parents collect at Fort Niagara.

Theresa also attributes Sarah's strength to the neighborhood.

"We have a very tight-knit neighborhood; everyone knows when Sarah's going in for a surgery or hospital visit and come over to show support," she said.

To the community and to anyone who meets her, Sarah is just as much like any other 10-year old girl, and "no one in the community," Theresa explained, "will ever allow her to think any different." 

Cyndi Whitehead lives directly across the street from the Kopasz family. Her 10-year-old twin daughters are best friends with Sarah. Upon moving into their house six years ago, the two families met and the Whitehead girls "instantly loved Sarah," Cyndi said.

Speaking about the accepting, loving, cul-de-sac neighborhood, she said the 14 kids within the area look out for Sarah and include her in everything. Once you meet Sarah, you will quickly discover how easy it is to fall in love with the young girl, Cyndi said.

"She's very outgoing, very social, and if you don't know her, you will in five minutes!" Cyndi said.

She recognized the lessons that her twin daughters have learned from Sarah, including empathy, compassion and respect.

"Differences are just that - differences," Cyndi said.

She noted the neighborhood kids and parents understand that "everyone wants to be liked and treated with respect." Cyndi credits the Kopasz family for the acceptance and love that Sarah receives in the neighborhood. "The family, in general, is very giving people; open people who will do anything for anyone. ... It is so easy to love Sarah, because that is how the family is, and everything is reciprocated because of what they give."

Greeting you with a big smile that is contagious, Sarah is not a shy girl to say the least. She loves to laugh, dance, watch the Disney Channel and also text her friends. Texting is a new thing for Sarah, her mom explained. After coming home from school in tears because she was the only one of her friends without a cell phone, her parents awarded her with one. 

"Her reading and spelling has become so much better since she started texting. I should have thought of it years ago," Theresa joked as Sarah's text message alert went off.  

Since Sarah was born, the Kopasz family has bonded and become stronger together. The relationship between Sarah and her sister, Gabriele, is unlike any other. It's the perfect big sister-little sister connection.

When Sarah was younger, Gabriele helped her mother out a lot with changing feeding tubes, going along for hospital visits, and just being by the side of her little sister for support and strength.

Today, Gabriele is pursuing a nursing degree in hopes of someday helping children in ways that the amazing doctors and nurses have helped Sarah.

Sarah has brought strength and appreciation for life to many people, which is why so many are willing to come together to help the Kopasz family. Edward DeVantier and Ken Scibetta are two of the many people who have taken the opportunity to join a great cause and raise funds for Sarah and children just like her.

DeVantier was the 2010 chairman of the Variety Kids Telethon. One of the honors as the chair is to partner with the Variety Kids producer in choosing the "Celebrity Child" of the year. DeVantier, who is active in the Lewiston Kiwanis Club, along with Sarah's grandfather, Ernie Krell, chose Sarah as a candidate for the honor. After an interview process with the families and nominated children, Sarah was chosen to be the 2010 Variety Kids Telethon "Celebrity Child." 

Lewiston has another connection to the Variety Kids Telethon. Scibetta was named 2010 Variety general chairman. Recognizing the lack of fundraising for Variety Kids in Niagara County, Scibetta, who is the co-owner of the Lewiston Village Pub, brought forth the idea to hold a fundraising event in the village.

"I wanted to draw from area businesses and show that we are an area that supports Variety Kids Telethon," he said of his mission to hold a Variety Kids fundraiser in the village.

Theresa grew involved in planning the event, as well. She plays a big role in booking the bands and the making the event not only one for adults, but also involving kids by constructing a "Kids Zone." She also goes door-to-door to the local businesses "begging and pleading" for donation baskets, which, in all actuality, doesn't require much begging at all, Theresa said.

The community support received from both the residents and businesses in the area is "unbelievable, huge," said Scibetta.

This year's PubFest will be one of the village's first festivals of the season, and held June 17-19.

 Just weeks away from the big weekend, Scibetta declared that organizers are already receiving baskets for the auctions, letters and donations with checks from sponsors.

Raising awareness for the wonderful cause of Variety Kids Telethon in the village community has, after only two years, made the PubFest the largest donation-raising event in Niagara County, with a total of nearly $1.2 million. This is now an event that "people look forward to every year," Scibetta shared, and fun for the whole family.

This year, there will be 14 bands with every genre of music during the three-day span, as well as kids games, demonstrations (from karate to dance and magicians), a classic car show, a huge beer tent donated by Certo Brothers Distributing, and food. One thing that Scibetta was sure to add was, "It's not normal festival food; it's food from the local restaurants."

Speaking on his beliefs on Variety Kids, Scibetta stated, "We are only as strong as the community we live in. It's an amazing feeling to give back to the community and the children."

That is why Scibetta and Village Pub business partner Ed Webster are donating 100 percent of all the proceeds to the telethon. These funds, along with all other funds donated to the telethon, benefit Women and Children's Hospital, the Robert Warner M.D. Center for Children with special needs, SABAH, Boys and Girls Clubs, the Niagara Falls HANCI Variety Peace Camps, St. Mary's School for the Deaf, Cradle Beach and Make-A-Wish. 

Anyone in the community can help children just like Sarah. Both Scibetta and Theresa said, "No donation is too small."

PubFest is full of great entertainment, and all for a good cause.

"There is the best food, best music and, best of all, you get to meet Sarah. She's entertainment all on her own!" Theresa said.

The best thing is that money raised June 17-19 stays within Western New York and helps children within the area.