2011-05-18 / Front Page
Dream Factory grants wish, brings music to everyone’s ears
One of the most difficult things to deal with at any age is chronic illness. One organization, Dream Factory of the Jersey Shore (DFJS), recognizes the challenges faced by so many children with chronic ailments, so its members work diligently to put a smile on their faces by fulfilling some of their dreams.
Greater Media Newspapers has reported on the philanthropic and fundraising efforts of the recently formed Dream Factory of the Jersey Shore, which focuses on granting wishes to chronically ill children ages 3-18 residing in Monmouth, Ocean and Middlesex counties .
Avid News Transcript reader Barry Tobias of Manalapan, who is vice president of The Peter Jay Sharp Foundation, arranged for the donation of funds to DFJS, designated for a resident of Manalapan, Englishtown or Freehold. The first dream funded by that donation was granted May 1 to Sarah Bernard of Manalapan.
Sarah, who recently turned 18, was born prematurely at 29 weeks on Jan. 21, 1993, along with her fraternal twin sister, Rebekah. As a result of complications related to premature birth, Sarah developed bilateral grade III intraventricular hemorrhages (bleeds) in her brain, which caused hydrocephalus (fluid buildup) on her brain, according to her parents, Cara and Mark Bernard.
Thankfully, Rebekah was delivered without any complications.
“My head blew up like a balloon,” added Sarah, who approaches her situation matter-of-factly, having dealt with it her entire life.
Cara, a respiratory therapist who works at University Medical Center at Princeton, was aware of the graveness of her child’s condition.
“The doctor told us there was a chance she would never walk or talk,” she said.
The neurosurgeon at Children’s Hospital of Philadelphia (CHOP) at that time, where Sarah was transferred, gave the Bernards hope. Dr. Ann Christine Duhaime inserted a ventricular peritoneal shunt, which drained the fluid from her brain to her abdominal area, to be absorbed into the body and passed out. The shunt corrected the problem, but had to be monitored closely.
Sarah had to endure numerous surgeries to correct clogs in the shunt before age 3, with multiple nonsurgical admissions between surgeries. At age 3 she had to have the shunt replaced with a longer tube to keep up with her growing body. At age 13, Sarah’s shunt malfunctioned in December, causing severe headaches. She had had neurosurgery prior to the Christmas holiday to correct the malfunction, and exactly one year later, during her freshman year at Freehold Township High School, 14-year-old Sarah, old enough to recognize the symptoms of a malfunction, completed her part as an oboe player in the school’s holiday band concert, then went to the emergency room and had surgery the next day to correct broken shunt tubing.
When she was 16, Sarah had two surgeries two weeks apart in September and October 2009. As a dedicated section leader in her marching band, one day after being discharged from the hospital following the September surgery, she attended a football game at her school to support her fellow marching band members.
Sarah also insisted on marching with the Freehold Township Marching Patriots in the Halloween Spooktakular parade less than one week after coming home from clearing a clog in her shunt in October. Her mom walked along closely, just in case, but Sarah made it, proudly wearing her dad’s United States Navy uniform and hat to cover the scars.
In March 2010 severe abdominal pain led to the discovery of a 7- centimeter sac of fluid, which was attached to the end of Sarah’s shunt in her abdominal cavity. On March 8, doctors surgically removed the lower half of her shunt through an incision on the side of her torso to determine if it was infected, and the following day proceeded to remove the infected other half within her brain and inserted a temporary external drain extending from the top of Sarah’s head. The following day the external drain had migrated to the wrong spot causing severe blinding pain as well as a dropped heart rate and oxygen level. The situation had to be corrected via emergency surgery on her brain.
“I couldn’t see or hear,” explained Sarah. “I had terrible pain in my head.”
Sarah remained in the pediatric intensive care unit at CHOP for one more week, with her mom at her side and her dad traveling back and forth with Rebekah, waiting for the infection to clear up. Her surgeon then replaced the entire shunt.
Sarah went home two days later, supported her friends in yet another school band concert two days after that, and returned to school five days later, only to have more complications set in that very day. She returned to CHOP for one more surgery, making it a grand total of five surgeries during March 2010, her junior year of high school.
Sarah marks everything down on her calendar and tries not to make too much of it all. She sees it as just a part of her life and said she won’t let it take over. She’s not embarrassed of her scars; they are just another part of her.
“It’s not that big of a deal,” Sarah said. “What I go through is nothing. When I see people who can’t talk at The Arc [of Monmouth, Tinton Falls, where Sarah volunteers], they are very fragile. When we go to CHOP and see kids worse off than me, it’s not that big of a deal. I deal with it and do what I have to do and don’t worry about it. I just go with the flow — get it?” she joked, laughingly referring to the constant flow of fluid draining through her shunt.
Sarah, now a senior at FTHS, works extremely hard and always strives for excellence. She is a member of the National Honor Society and is on the Principal’s Honor Roll, having received straight A’s in three marking periods during her senior year.
Astudent advocacy leader at her school, Sarah explained that she talks to students with learning disabilities and advocates for them to stick up for themselves.
Sarah is the section leader of both the flute and oboe sections in the Freehold Township High School marching band, concertino band, concert band, wind ensemble, and pit band. She has also been a member of the Colts Neck Community Band, and this year made the All-Shore Symphonic Band.
Sarah and her sister Rebekah have volunteered at the Old Bridge Animal Shelter for five years and Sarah participated in the Walk for Hydrocephalus in Washington Township with her father on Oct. 10, 2010.
As a member of TheArc of Monmouth’s Saturday Respite Program, Sarah works with teens and young adults with physical and cognitive disabilities and provides support as they engage in a variety or recreational activities.
Sarah and her parents are proud that she was accepted to Kutztown University of Pennsylvania, where she will be studying to be a special education teacher of mentally and physically handicapped children.
“I want to work with learning disabled children,” Sarah noted.
After a screening process, The Dream Factory of the Jersey Shore determined that Sarah would be an excellent candidate to receive her dream of having her own highquality oboe and flute to use in the band at Kutztown University. DFJS board of director member Patricia Hahn worked diligently to make it happen, and she and her fellow board members, Janet Paulmenn, Robin Baine, Luanne Wood and Bonnie Murphy, presented the instruments to Sarah May 1 at Music and Arts in Lawrenceville. Sarah’s parents, sister, maternal grandparents, family friends and childhood friends Morgan and Amanda, also twins, were there to support Sarah as she entertained everyone with tunes on her new instruments. Her flute rendition of Journey’s “Don’t Stop Believin’ ” seemed quite appropriate for the moment.
Said Hahn: “We were impressed with what Sarah has accomplished through her music despite her health issues. We were grateful to be able to help provide her with the instruments for college.”
Music and Arts gave the Dream Factory a discounted price for the instruments, and store manager Jessica Buchanan made sure everything went smoothly, also giving Sarah two gift cards for future purchases at the music store.
In addition, at a luncheon that followed, the Dream Factory members presented Sarah with a certificate saying that she and three guests will be whisked away by limo to New York City to see a June showing of “Wicked” on Broadway. They will also be treated to dinner and a backstage personal tour and a meet and greet with the orchestra’s musicians.
The certificate concluded with the message: “The Dream Factory of the Jersey Shore hopes that all your dreams come true now and forever.”
Sarah exclaimed, “I was so excited when they gave me the certificate. I’ve always wanted to see a Broadway show with my friends.”
Her father, Mark, said, “The Dream Factory of the Jersey Shore is fulfilling the tremendous task of relieving families of stress or anxiety, if for a brief period or long term, by giving the child the chance to be a child.
“It is a tremendous burden that a child who has a chronic medical condition has to carry,” he continued. “We thank the Dream Factory for lessoning that load.”
“We know how much a chronic or critical illness affects the child and family, so it’s nice to bring them some joy,” said Janet Paulmenn, DFJS public relations coordinator.
“There are many hurdles in raising any child, and regrettably, some children have more frequent or higher hurdles to overcome,” Bernard said. “It is wonderful to know people who have the thoughtfulness and mission to remove or lessen those hurdles. The Dream Factory has allowed Sarah to have a brighter smile, create memories and provide her the opportunity to pursue her passion for playing flute and oboe in college. It has been a wonderful gift.”
DFJS is planning two upcoming events to raise funds for other children’s dreams. The nonprofit is selling $10 tickets for a baseball game July 23 at FirstEnergy Park, home of the Lakewood BlueClaws.
A softball marathon is also being planned for Aug. 27 from 9 a.m. to 10 p.m. at Drum Point Park on Brick Boulevard in Brick. Teams of 10 people over age 18 are being sought to participate in 50-minute friendly games. Companies, towns, organizations, etc., may also sign up to compete against each other. Sponsors and donors are being sought in addition to magicians, face painters, balloon artists, and others to volunteer their talents for children’s activities.
Dream Factory of the Jersey Shore is also on Facebook.