Gina Paparella will tell you straight out that her daughters’ lives would be very different if not for the specialized care they received when they were younger.
Julia, 11, and Mia, 8, both struggled with language delays when they were younger. Each girl had other issues as well – issues that, without the care they received at Children’s Specialized Hospital, from pediatric specialists, may never have improved.
“If they didn’t have the services, the outcome wouldn’t have been as good,” the Bayville mother said. “I really wholeheartedly feel they wouldn’t be where they are today without the care they received at Children’s Specialized Hospital,” she said.
The Paparella family isn't the only one that has benefited from the services offered by Children's Specialized Hospital; the Toms River-based hospital, serves 20,000 children in New Jersey, providing pediatric rehabilitation for a variety of issues, including spinal cord injuries, physical disabilities and developmental issues, according to Amy Mansue, president and CEO of the hospital.
Funding, however, is a constant issue. Federal funding through Medicaid is being considered for cutbacks as the federal government looks for ways to cut spending and reduce the deficit. It's for that reason that fundraisers such as Saturday's Zumbathon at Oxygen Fitness and Sports in Bayville are important -- to help the hospital continue to provide a wide array of services to so many children.
The Zumbathon at Oxygen -- located in the Baywick Plaza, Route 9, Bayville -- costs $20 per person pre-registered or $25 at the door, and runs from 10:30 a.m. to 12:30 p.m. Muscle Maker Grill, on the premises, is donating 30 percent of its sales during the fundraiser as well. The Zumbathon is open to members and nonmembers, and nonmembers will be able to take classes earlier that morning, beginning at 8:30 a.m., at no charge.
While most people think of Medicaid as serving older citizens, its role in the care of children is critically important, Mansue said. It enables children whose families do not have private insurance to have access to the same level of services as those who are covered privately.
“Spending money to care for children at the earliest stages of their lives can mitigate and even eliminate disabilities,” Mansue said.
The Paparella girls are a testament to that, Gina said. Over the summer, they traveled to Washington for Family Advocacy Day, to speak to New Jersey lawmakers about the importance of protecting Medicaid and funding that helps doctors get the education to specialize in particular areas of pediatric medicine – just as doctors who treat adults can specialize in specific areas.
“This cause is really important to me,” Gina said. “One in three kids need Medicaid (to cover their health care). Kids with chronic illnesses need treatment and they need medication. I am not saying that cuts don't need to be made, but they should not be made on the backs of the children.”
Julia’s story began when she was a year old. Her wellness checkup showed her growth had slipped significantly, so much that her pediatrician, Dr. Jean Haymond of Westfield, sent the family to high-profile hospital after hospital. Test after test came back with no answers, and there was talk of putting Julia on a feeding tube because she was becoming more and more unwilling to eat, and Julia’s condition was becoming life threatening.
“She was diagnosed with failure to thrive,” said Gina, whose family moved to Bayville when Julia was young. Haymond sent them to Children’s Hospital of Philadelphia, Gina said. It was there that it was discovered Julia had food allergies that were causing ulcers in her stomach.
“She was refusing to eat because eat because eating was painful to her,” Gina said.
As a nutritionist and feeding team began to find a solution for Julia’s food allergies, her language issues began to become apparent.
“We were so focused on the feeding issue that we hadn’t noticed the delay as much,” Gina said. Julia knew words and could label things, but, at 3-1/2, couldn’t put more than two words together, Gina said.
“She couldn’t communicate,” Gina said. “You had to play guessing games to figure out what she was trying to say,” and Julia would get frustrated.
"She could memorize songs and sing an entire song, but she couldn’t have a conversation,” Gina said. “I remember thinking, ‘Is she ever going to say I love you, Mommy.’ “
Therapists at Children’s Specialized Hospital taught Julia sign language as they worked to help her speak, and by the time she was 5 years old, she was speaking in complete sentences. Her therapy continued, and when she was 8 years old doctors were able to diagnose a central auditory processing disorder, where the information Julia’s ears took in wasn’t relayed properly through her brain.
Essentially, information that was processed by her right ear was taking what Gina described as “a Sunday drive” to get where it needed to go in Julia’s brain.
For Mia, the issues were different. She, too, had a language delay, but it was identified much sooner, Gina said. At the same time, Mia was diagnosed with a sensory integration disorder – she craved having pressure on her skin, and literally climbed walls at home to satisfy that desire. At the same time Mia was very sensitive to certain types of fabric, and getting her dressed was extremely challenging, Gina said.
Therapy Mia received not only resolved her language delays but enabled Mia and her family to find ways to manage the sensory issues that in the past led to much frustration.
“I look at them now and I know they’re going to be OK and do great things,” Gina said. “These therapists took so many hours out of their own time to help both girls. They were so creative and innovative in their treatments. They understand that (children) respond differently to different things.”
Mansue said that is in part a testament to the specialization that doctors at Children’s Specialized Hospital have received – and why it is so important to maintain that education funding.
The issue of protecting Medicaid for children is just as important, however, she said.
“Fifty percent of the children we treat are covered by Medicaid,” Mansue said. “We have the largest number of services for autism.”
But the number of doctors who specialize in treating children with autism still lags, she said. In New Jersey, where 1 in every 62 children has been diagnosed with an autism spectrum disorder, there are just 51 doctors statewide trained to care for those children. That means parents may wait months for an appointment, which delays those children getting the help they need – help that can put them on a more independent path.
The Paparella girls are no longer receiving therapy – “They’ve been discharged from Children's Specialized Hospital,” Gina said – and that is exactly the goal of these early intervention programs, Mansue said.
Though the Paparella girls were treated under private insurance, Gina said, no child should be denied the services that Julia and Mia received. The Paparella family – including Gina's husband, Vincent, and son, Brendan – traveled to Washington in August and met with New Jersey Sens. Frank Lautenberg and Robert Menendez, and Reps. Frank Pallone, Bill Pascrell, Jon Runyan and Leonard Lance so Julia and Mia could tell their story and underscore the critical need to protect this funding, Mansue said.
“It puts a face on what can be very complicated health care issues,” Mansue said.
Gina said the experience was very rewarding.
“I told Julia and Mia to speak from the heart,” Gina said.
"Washington was a memorable experience for our family," she said. "We spent many hours on Capitol Hill traveling between the House and the Senate. I was very proud of them as they bravely spoke to our representatives and shared their life's stories. The girls became advocates for themselves and a voice for the children in our country. It was an amazing experience."
You can pre-register for Saturday's Zumbathon by clicking here.