Watch my introduction in which I share some things about myself as well as my goals for my Mult-Platform storytelling class this fall semester.
Thursday, December 15, 2011
On the Process of Writing this Story: I chose to cover this event as my news print story for my Multi-Platform Storytelling class. I thought it was really interesting how King's students were able to provide much needed services while also learning a lot about what professional writers do for the arts. I had the opportunity to attend the performance and speak with students there but also the director of the performance. I believe the most important aspect in writing this story was to feature all the different components from the inner workings of the class to their involvement with the show.
Arts YOUniverse’s production of “Bunnicula,” a children’s play based on a book series about a vampire bunny that sucks the juice out of vegetables, took the stage to benefit the West Pittston Library over the weekend, but not without the help of students in the Writing for the Arts class here at King’s.
Dr. Noreen O’Connor, English professor, received a Shoval Grant to develop the Writing for the Arts course, which helped her provide students with the opportunity to partner with Kathleen Godwin, director of Arts YOUniverse, an organization dedicated to providing the community with inexpensive art programming.
Early in the semester, students in O’Connor’s class met with Godwin to brainstorm performance dates, ticket cost and the play’s program, which they wrote and published.
“One of the biggest things I took away from this class was the pacing of business writing; you sort of figure out what you need as you need it, and then figure out how to do it and make it work,” Kevin Conroy, junior from Canadensis in the Poconos, said.
Students also met with John Maday, membership services coordinator of the Wilkes-Barre Chamber of Commerce, to discuss how to advertise for the play, including language for advertising letters, ad formats and sizes, and incentives to offer advertisers.
Maday also previewed the student’s fundraising letters and gave recommendations for improvement.
Sarah Scinto, junior professional writing major, wrote the “ask” letter that became the basis for the letter sent out to potential advertisers, which raised over $500 in support of the play.
“We really learned by doing in this class. You can talk and talk about writing and its practical uses, but I don't think you learn much just by talking. You have to use what you learn in a tangible way, and this class lets us do that,” Scinto said.
James Donnelly, senior, created the design for the “Bunnicula” advertising poster, which his classmates distributed to local libraries, schools, businesses and other places in the community for children and their parents to see them.
Scinto also worked with Sue Henry, WRKC general manager, to develop a 30-second radio PSA (public service announcement) that ran not only on WRKC but other commercial radio stations such as WILK, “The Mountain,” “Froggy,” and KRZ.
O’Connor’s class also elected to set up a promotional web blog for the production, including written updates by the students about the show. Their entries can be found here: http://bunnicula-kings-artsyouniverse.blogspot.com/.
“It allowed the audience, potential advertisers, and even the cast members’ families to get a glimpse behind the scenes and understand what we were doing,” Scinto said.
At the weekend performances, the Campion Society, King’s writing club, joined O’Connor’s class by setting up a refreshment stand, which raised more than $100 at Sunday’s performance alone.
When O’Connor’s class began their project in the fall, they didn’t expect the damaging impact of hurricane Irene and tropical storm Lee on the local community. In light of the carnage left behind, the class decided to donate some of the proceeds towards the children’s section of the West Pittston Library, which suffered a lot of damage.
Their efforts also positively influenced the lives of the teenagers and children who learned new things from performing in the play.
“Yeah, it was a new experience (singing and dancing). Teamwork is definitely key from everyone getting in costume, getting people on and off stage,” Kevin Lazarowicz, who played Robert Monroe, said during a questions and answers session following the Sunday performance.
Angel Berlane, director of “Bunnicula,” believes the arts are important for children, especially at a time when people are taking the arts out of schools.
“I think the biggest gift you could give somebody is your time. Giving them (the children) that time is really important for me as the instructor so that they can go out and have that focus, have that energy and have that drive because they’re applying it on stage, then they’ll apply it in real life,” Berlane said.
Berlane is grateful for all of the work that King’s did on the production, referring to the play program as “one of the most beautiful” she has seen in the area.
“I think we all learned valuable lessons on how to write and work for professional companies which will give us a great advantage when starting jobs post-college,” Donnelly said. “It was not an easy task to accomplish but after seeing how well the production went; we can definitely be proud of the hard work we all did.”
Since he was born, Zach Decker suffered from various health problems. His parents Jeanie and Scott Decker of Pittston struggled with doctors for two and a half years to find an accurate diagnosis for him.
“He had a lot of problems and we didn’t understand why,” Jeanie said. “And none of the doctors could tell us why. He had this big, long diagnosis: failure to thrive, microcephaly (small head), poor growth, he had contractures in his muscles and legs. They couldn’t fit him in a category. They couldn’t find out what was wrong.”
After suffering from severe malnourishment, Zach was hospitalized at Janet Weis’ Children’s Hospital in Danville. While there, different specialists examined him. Dr. Carpenter was visiting from Philadelphia and, after looking at Zach, knew what was wrong with him.
“It only took him like two minutes and he said, ‘I know what your son has, I’ll be right back.’ And he comes back with a brochure about cockayne syndrome,” Jeanie said. “In it, we open it and my husband says, ‘how did you get a picture of my son.’ And he said, ‘that’s not your son, Mr. Decker. That little boy is 13-years-old.’ It was another child that looked just like Zach.”
Cockayne syndrome or CS is a form of premature aging dwarfism that ages the organs of its victims. Physically, CS children look smaller and baby-like. Children with CS share similar facial features such as deep set eyes and small peak noses. They look a lot like each other.
Dr. Carpenter also explained to the Deckers how children suffering from the disease pass away young.
“That was hard to deal with. But it was kind of a relief to finally know what it was,” Jeanie said. “In the back of my mind, I had always been thinking they had said something must have happened while I was pregnant. There must have been some kind of trauma. And I’m thinking, what did I do when I was pregnant? I always felt guilty about it.”
Suffering Loss and Learning More
In 1999, Zach passed away from the disease. Then eleven years later, this past may, at 7-years-old, his sister Faith Decker would also die of cockayne syndrome. After suffering through the death of their children, the Deckers have been working hard to use what they’ve learned about the disease to raise awareness.
“For every year a CS child lives, they kind of age eight years in a year,” Jeanie said.
Children suffering from cockayne syndrome have poor immune systems. They don’t follow the regular developmental growth chart, and therefore most CS children don’t walk or talk.
Because of their poor growth, many CS children are on feeding tubes. In fact, most of them are on medications to prevent them from vomiting a lot.
Another unique quality about CS kids is they are sun sensitive. Most CS children are unable to be out in the sun. They don’t sweat so sun block can do them more harm than good.
“You would think he had sunburn with the sun block on, but it wasn’t actually the sunburn, it was just from the sun block,” Scott said. “He would get really, really red and hot. And there are times, he even looked like a lobster.”
There are three types of cockayne syndrome: CS1, CS2 and CS3. Children with CS1 have some medical problems but can walk and have some speech skills. Their average life span can be between 10 and 20 years.
Children with CS2 have more medical problems and don’t have the ability to walk or talk. Their average life span is between four and eight years. Both Zach and Faith were considered CS2.
Children with CS3 are those kids that live longer and healthier lives. They are the rare exception of children who live to be forty or even fifty years old. Doctors can’t tell if a child has CS3 right away, but rather it is a diagnosis made as the child lives out his or her life.
Cockayne syndrome is a rare disease because both parents have to carry the mutated gene. The mutation stems from a missing protein in the carrier’s DNA. When two carriers reproduce, there is a chance their child will have both mutated genes and be born with CS.
When Zach was born, Jeanie was only 19-years-old and attending college. Scott and she were not married.
“You went from being a regular college student doing stuff to this mom,” Jeanie said. “Then, you think it’s going to be ok and you think ‘I can handle it. I can do this.’ And then you end up having a child with special needs. And it just compounds it.”
Not only did she adjust to having a child with special needs but to the fact that she would lose her child in a short span of time.
“You have to decide at that point what’s more important in life,” Jeanie said. “I ended up quitting school at the time to stay home to be with him because I knew I wouldn’t have him forever.”
While Jeanie stayed home with Zach, Scott worked to provide for the family. Although times were not easy, they wouldn’t change a thing.
“It made me a stronger person, made me a good mom, a good caring person,” Jeanie said. “I don’t put up with a lot of stuff anymore because at first, when I use to tell doctors something was wrong with Zach, it was like you’re a first time mom and a kid. You learn how to fight for what’s important.”
Family and Friends
Taking care of a child with special needs is challenging in itself but it can become more stressful without the support of those who care.
“I think we lost some friends who couldn’t handle it, who didn’t want to deal with people that were too busy to go out and have fun because they were home taking care of their child all the time,” Jeanie said.
The absence of certain friends will remain a constant void even today.
“I still don’t talk to the people that basically wouldn’t support us,” Scott said.
While some friends abandoned Scott and Jeanie, others including family kept them strong.
“We had very supportive families and friends who wanted to know everything they could know and what they could do to help and I don’t think we would’ve gotten through taking care of Faith, or Zach, without our families,” Jeanie said.
Zach, the Hugger
Despite having the same syndrome, both children had unique personalities. Zach was more shy and conservative. He enjoyed being held and protected.
He also didn’t sleep very well at night. Scott and Jeanie would take two-hour shifts throughout the evening and early morning to take care of him. However, sometimes he would break from his cycle and sleep longer.
“It kind of freaks you out when you get use to that cycle and all of a sudden, he just wants to sleep,” Scott said. “You just wake up and you’re like I don’t know what to do. ‘Do I wake him up?’ You end up giving him little nudges to make sure he’s ok.”
Faith, the Daredevil
Faith was different in that she was adventurous and active.
“As small as she was and as much as she couldn’t walk, she was still an active, hyper child who wanted to go,” Jeanie said. “She didn’t like to sit still for very long. She would roll all over the floor and attack us.”
She enjoyed rough play with her dad.
“She would roll over top my head. I’d be lying there like ‘you planning on getting off daddy’s head. And she start laughing at me,” Scott recalled.
Faith was healthier than Zach; therefore, she was able to have a more normal childhood.
“She went to Wyoming Valley Children’s in Kingston,” Jeanie said. “It was nice because it’s a preschool setting where there are kids with special needs mixed with typical children. She really thrived in that environment.”
After discovering Zach had CS in 1996, Jeanie and Scott did their best to handle the news.
“You can’t prepare, you just have to deal with what’s given to you,” Jeanie said. “And you deal with it the best way you can. And for us, at first, it was educating ourselves about it which was through Share and Care basically.”
Share and Care: Cockayne Syndrome Network is a global network dedicated to providing resources to families with children suffering from CS. The network sponsors annual retreats where families from all over the world come together.
During this past July, Scott and Jeanie drove to this year’s retreat in Orlando, Fla.
“It’s like when you leave those retreats, you have this withdrawal because you’re in this environment where you’re with everybody who knows exactly how you’re feeling, what you’ve been through, what you’re going through,” Jeanie says.
After losing Faith in May, they found this year’s retreat to help in the healing process.
“I told all the families at the first night, the dinner where you introduce yourself, I’m like thank you for letting me hug your child because it just helped me. It was nice,” Jeanie said.
During the fall, families across the country sponsor walks for the Share and Care network to raise awareness and funds for the cause.
On Saturday, Sept. 24, the Deckers sponsored a 2011 Butterfly Walk in loving memory of their children at Community Park in Hazelton. There was a food vendor who donated 35 percent of proceeds to the cause. Other events included face painting, a duck pond and baskets being raffled off.
At the walk, there was a butterfly release.
“The butterflies relate to the children that have passed,” Jeanie said. “It represents their free spirit once they passed, that they can fly away and be a butterfly and fly away from all the pain and suffering that they had and just be happy and free.”
There is a 2-year-old little girl named Julianne who was recently diagnosed with CS1 in June. She is from Nanticoke.
“They had thought she had it in May which is right around when Faith passed away,” Jeanie said. “So I had just talked to her mom on the phone and the next week, Faith went in the hospital and never came back home. It’s odd we’re in the same area but its good, because we’re closer.”
The Deckers are hoping to raise awareness so that children can be diagnosed sooner. Many CS children are diagnosed incorrectly as having cerebral palsy.
“Children that are diagnosed sooner, I think, have a better quality life,” Jeanie said.
The Deckers also believe each CS child is sent to earth with a special purpose.
“I always say they’re like angels sent from heaven with the purpose to spread love,” Jeanie said. “They just love everyone.”
For my news radio piece for my Multi-Platform Storytelling class, I covered the new Resident Assistant application requirement that states each applicant must have one semester of residency in order to be considered for any available positions next school year. The story was controversial in that commuters were technically unable to apply anymore without making a financial investment by living on campus during the spring semester of the current academic year. I had to be careful to present both sides of the story in a fair and unbiased manner. Also, I needed to conceal the identity of an interviewee who wished to remain anonymous.
Click here to listen to the story.
For my radio feature story for my Multi-Platform Storyteling class, I interviewed Pet'o Kmec, who came to the United States from Slovakia to pursue a better education during high school. His story involves his struggle to adjust to life in the United States, his time living on his own in high school and his journey to King's College. The story required sharp interview skills and for me to be empathetic towards my subject. It also required me to pick up on how to properly use a tape recorder during an interview. I got to know more about him and the people he met and loves in the United States.
Click here to listen to Part 1 of the story.
Click here for Part 2.
For my video news story for my Mult-Platform Storytelling class, I covered the judges public forum held in the Burke Auditorium at King's College. There were six open seats on the Luzerne County Court of Common Pleas, but seven candidates. Not only was I able to get a taste of video news coverage, but I also learned about the candidates running for the available positions. It was a learning process and even though we lost a lot of our footage (the audio didn't record on some of our cameras), I learned how to make the most of the video you have for any given story.
Watch the story here.
For my video feature story for my Mult-Platform Storytelling class, I covered the Multicultural Club and Diversity Council Fashion Show, supporting St. Jude Children's Hospital. This was my first time collecting video for a story. Although nervous at first, I became more familiar with the camera and even enjoyed asking questions of the students and faculty involved in the show's production. Working in FinalCutPro, I was able to learn video editing and craft a video that captured the night's events.
Click here to watch the story.