This page last modified on Thursday March 11, 2010
For information on Variety - The Children's Charity of Buffalo & Western New York,
Please call us at (716) 854-7577 or e-mail us at:
vcstaff@varietykidstelethon.com
48th Annual
Sunday March 28, 2010
Official Countdown To Telethon 2010:
Variety is proud to introduce 9 year old Sarah Kopasz of Lewiston, New York as the 2010 Variety Kids Telethon Celebrity Child. Sarah along with her Mom, Theresa, Dad, David and sister Gabrielle will represent the thousands of children that the 48th annual Variety Kids Telethon will help.
Sarah was born August 13, 2000 in Las Vegas, Nevada. She was diagnosed with a rare genetic disorder called XQ 26,28 duplication. This is a very rare genetic disorder that no other female has. The abnormality side effects are hemihypertrophy which is one side of her body is longer and thicker. Sarah has a 3 1/2 inch difference on her right side compared to her left. Sarah's body does not produce enough growth hormone so she is given injections daily to compensate for this. Because of this deficiency, she is scanned every six months for cancerous tumors on her kidneys. This condition has made her journey very difficult and painful. The genetic abnormality effects her growth, muscle tone and learning ability.
At the age of three months Sarah had her first Feeding tube placed with a fundoplication. This is a procedure where the doctors take the stomach and wrap it around the esophagus and sew it shut. This prevents patients vomiting but can have very painful side effects. One which is "wretching", this was and still is Sarah's biggest road block. At ten months old she herniated this fundoplication and had to have it redone. Sarah's low muscle tone also affects her eyes. She had no muscle strength to keep her eyes open. She would always put her head back so she could see. At 1 year old she had her first of 6 eye surgeries done. The doctor's put in plastic slings in her eyebrow to lift her lids open which is called ptosis of the eye. These plastic slings would not last long and after a year she would have to have another set put in. In 2005 when Sarah was four years old she went to John Hopkins Hospital to have a donor fascia (cadaver donor muscle) put in as they were more of a permanent solution. She also went through an eight week intensive, yet painful, therapy to learn how to eat through her mouth. Sarah has had physical, occupational and speech therapy since she was three months old. She knew 20 signs of sign language by one year old. Her parents were told by Sarah's doctors not to expect much from Sarah as their professional opinion was it would be very difficult to see her walking, talking or eating. David and Theresa would not accept this and pushed and never stopped knocking on doors and asking questions.
In May 2004 Sarah's Dad, David, accepted a job at the Seneca Niagara casino and the family moved to Lewiston. All of Sarah's records were transferred to doctors at Women & Children's Hospital of Buffalo. Sarah's parents met Dr. Albini from the Endocrine clinic. What a difference from what the family encountered in Las Vegas, Nevada. Dr. Albini is a take charge doctor who treats them like a member of her family. She made sure Sarah had every test to make sure she was getting the best care possible. She scheduled kidney sonograms every six months to rule out Will's tumor. Sarah is at high risk for this cancer because of her three inch leg length discrepancy. Sarah takes growth hormone shots daily and with the combination of the two she is at risk. The wonderful x-ray technicians at Women & Children's Hospital are always so comforting to Sarah. Dr Galpin is Sarah's orthopedic Doctor. He always consults the family in regards to her growth and bone issues. Sarah has a torn meniscus of her left knee which makes it hard for her to enjoy most kid oriented activities. When Sarah is older the decision will have to be made as to whether do a painful surgery to correct her leg length discrepancy.
In September 2009 after a very hard struggle and a lot of hard work at therapy, Sarah finally had her feeding tube removed. This has made a big difference in Sarah's take on her world. She see's that she can do the things she wants she just has to work that much more for it. Sarah's entire family celebrates the small strides so she can have that big party in the end.
Sarah attends school at the Lewiston-Primary Education Center in Youngstown, New York where she is in the 3rd grade. During the summer, she attends the Buffalo Hearing and Speech Center.
Sarah has succeeded everyone's expectations. She now faces leaning based hurdles and still has many surgeries ahead of her to overcome her length discrepancies.
In 2007 Sarah had the thrill of a lifetime when she met the entire cast of High School Musical 3 on the set in Utah. Sarah made such an incredible impression on the young stars and Sarah still today talks about meeting Ashely Tisdale and Zac Efron. She had dinner with Kenny Ortega, the movie director and the producers of the movie.
Sarah enjoys Disney movies, collecting rocks, performing her own Sarah shows for her family and friends, enjoys her animals and loves being a little sister to her big sister Gabby. Someday she wants to be a jewelry designer, actress, musician and teacher
Whenever one sees Sarah, she has a smile that lights up a room. Sarah has made great strides thanks to the help of her family and doctors. Sarah is representative of the thousands of children that the annual Variety Kids Telethon helps each year. Children that want to smile, achieve hopes and dreams and enjoy life to the fullest. Together and with the generosity of Western New York, we can all...Help Our Kids Smile!
