Story posted Wednesday, June 17, 2009
Terri Ann Fester: Heart of a Champion
Terri Ann
By DENISE FLEISCHER Lifestyle Editor
Maine West High School senior Terri Ann Fester has experienced a great deal of life's challenges for someone who is only 17-years-old.
She lives with her parents and twin 14-year-old brothers in Des Plaines. That part of her life is wonderful.
Her entrance into this world was difficult. She is a surviving twin who was born 10-weeks premature. Her sister, Mary Lynne, died at birth, and Terri Ann was born without a heartbeat and was not breathing. The doctors saved her life, but her family was informed that her battle to survive was not over. It was a very difficult and traumatic time for the entire family.
The first 96 days of Fester's life were spent in intensive care at Lutheran General Hospital.
"She came home from the hospital with a central line in her chest needing regular blood tests and transfusions, a 3-hour medication schedule around the clock and an apnea monitor to put on her at night that sounded an alarm if she stopped breathing," said her mother, Lynne.
Feedings, medications, doctor's appointments, home nursing visits and therapy appointments became the norm. When she was 1-½ years old, her parents received a written evaluation of her existing condition. Fifteen current conditions were listed, one being possible spastic quadriplegia, meaning she might have cerebral palsy. Having had a brain bleed from lack of oxygen at birth, her brain's ability to control her muscles was affected. This has brought about her need for vision, speech, occupational and physical therapy most of her life.
When Terri Ann was three, her parents welcomed Ken and Kurt into their lives. The twins were born five weeks early after four weeks of bed rest. Their big sister has enjoyed watching them grow up.
When she entered school, early intervention therapies through the school district were established.
When she was 6-years-old, she was diagnosed with Myelodysplastic Syndrome, a rare type of pre-leukemia.
"Terri Ann had a low platelet count her whole life, having transfusions when needed, but it never stopped us from having fun," said her mother.
"In Oct., 1998, we went on a family vacation to Florida and Disney World. Terri Ann was a little under the weather while there and when we returned, a blood test and subsequent bone marrow biopsy revealed that she was a very sick little girl," added her mother.
Her only chance of survival was to have a bone marrow transplant. In 1998, she had a bone marrow transplant using her brother Kurt's marrow. For three months, she was at Children's Hospital in Wisconsin and at the Ronald McDonald House across the street.
"For Kurt's part, he was in the hospital for two days, sore for a few more and aside from his still present, 'hero scars,' was back to normal soon after. About a year after the transplant, Terri Ann was much healthier than she had been her whole life," Mrs. Fester added.
Ten years have passed since Terri Ann's transplant. She's gone to One Step At A Time Camp, for children with cancer, since she was 10. For two weeks in the summer and one week over the winter break she goes to camp in Williams Bay, Wisc. She has traveled to Springfield on an advocacy trip and enjoyed a stay at a Dude Ranch in Arizona. She has been granted a wish by the Make-A-Wish Foundation to go to Maui with her family. She also plays on a "Buddy Baseball" team in Mt. Prospect for kids with disabilities.
"She bats in her chair and is pushed around the bases by one of her brother buddies or girlfriend buddies. It is only two innings, takes about an hour and produces the most smiles of any baseball game I have ever witnessed," Mrs. Fester stated.
She also takes part in Maine Township Special Olympics every two years and has ribbons to prove her achievements.
"Terri Ann has always been the biggest cheerleader of any and all the sports that Ken and Kurt play," said Lynne. "She loves being on the sidelines of the Junior Warriors basketball games, close to the action, and often has ear plugs in because loud noises are better for her if they are muffled."
Mom said that Terri Ann continues to win the hearts of the boys' coaches and is often found giving a good-luck hug before the games and high fives to their teammates.
Over the years, she has been hospitalized 17 times and has had 13 surgeries. For mobility, she uses a wheelchair for long distances and a walker when she is at home.
She continues to have a heart of gold and she and her family are always optimistic.
"You know people never know what challenges they will face in life. But we all get them and have the option to accept them head on and continue as we would have anyway or dwell in the negative," said Lynne.
The Festers chose early on to stay optimistic because that is the type of people they enjoy being around. It was easy with a very supportive family, friends, therapists, teachers, doctors and nurses, she added.
"I guess that optimism rubbed off on Terri Ann. No matter what - she can bring a smile to anyone's face just by being her happy self."
Mrs. Fester stated that her daughter has been like that since she was a baby. There have been many down days, but they try not to bring other people down there with them. They lean on each other.
She has been such a trooper, even now, since being diagnosed and treated for a brain tumor. Her latest surgery was on Apr. 23 at Children's Memorial to have her muscles lengthened.
Terri Ann continues to take her core classes at Maine West. She is a member of Project Connect and Friends Connect. She inspires students with speeches on living with a disability and continues to dream about future vacations and watching her brothers' teams to victory.
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