Meet Our Patients

How does your donation make a difference? The generosity of our donors helps us treat more patients and families through some of the most difficult times of their lives. Their courageous stories will inspire you for years to come.

Alyssa Glick

girl being helped to walk by womanEsther Glick, of Queens, New York, beams with positivity. Her voice is full of happiness and hope for her daughter—an attitude she credits Children’s Specialized Hospital for giving her. Alyssa Glick’s journey began in March 2012, when the 10-year-old suddenly came down with a fever and was simultaneously unable to move one of her legs. After three days Alyssa’s doctor sent her to the emergency room. Esther was first told it was paralysis, a tumor, or acute disseminated encephalomyelitis (ADEM) on the spine. Alyssa’s numbness and swelling worsened, and she became paralyzed from her upper back down to her feet. Alyssa was put on heavy steroids, and endured more swelling.

On March 7, Alyssa and her family were sent to PSE&G Children’s Specialized Hospital in New Brunswick for intensive inpatient rehabilitation, which Esther says is the best thing that could have happened for her daughter and their family.

“The team there put Alyssa back together. They taught her how to live life in a wheelchair, and as she regained feeling and movement in her legs, and how to walk again,” she says. “Her occupational therapist was incredible. Tara, her child life specialist, helped us do everything. And Laura, her physical therapist, got Alyssa where she is today. She was like another mom to Alyssa.” Alyssa was also one of the first patients to use a brand-new piece of equipment in the physical therapy gym at the hospital. A recently installed ZeroG machine, help patients regain the ability to walk independently. It is the world’s most advanced body weight support system for walking and balance training. Children’s Specialized is one of only two children’s hospitals to have the ZeroG equipment, and one of only twenty sites in the world.

With the use of this new system, in which a patient walks using a harness attached to a track in the ceiling, and the help of her therapists, Alyssa had the ability to bear weight earlier on in her rehabilitation, while in a safe environment, making every stride stronger than the last. Alyssa left the hospital on June 5, after three months of inpatient care, and visits Children’s Specialized for outpatient care. Her family regularly commuted from their Long Island home to come to Children’s Specialized.

Today, Alyssa is walking, jumping and even got on a bike again recently. “I wasn't fully cognizant of her diagnosis when we got out of the hospital,” Esther remembers. “I asked, why are you teaching her how to be in a wheelchair? When I had my first meeting they gently told me the truth that we had a long way to go. My first thought was that she would never ride a bike again. It was a real emotional moment when she got on the bike. We're well on our way."

Bobby Deegan

boy in wheelchairWhen a child is born, parents have only one wish—for their baby to be healthy. Most parents check fingers and toes minutes after birth and count their blessings. Eileen and Robert Deegan, of Jersey City, NJ, were overjoyed when they welcomed Bobby into the world on January 26, 2003. He was born prematurely at 28 weeks.

It wasn’t until Bobby was about a year old when his mother, Eileen, started to realize that something was different. Bobby was fascinated by trains; he enjoyed watching fans spin and water be flushed down a toilet. Eileen started to notice his frequent flapping of the hands. Bobby was also delayed with walking and had a difficult time speaking. In fact, Bobby didn’t start to speak until he was three years old. Although her son was a very “social” baby, always smiling and waving at people, it would take him a long time to warm up to people who were not his parents. He battled high levels of anxiety and it wasn’t uncommon for him to scream and be unruly. Bobby was very attached to his mother, and Eileen stayed at home with him for two years. When he was about two-and-a-half, Eileen enrolled Bobby in a program based in Hudson County for people with developmental disabilities.

At the age of four, Eileen and her husband, Robert, took their son to Children’s Specialized Hospital in Mountainside to be professionally evaluated. The news they received wasn’t the most favorable, but at the same time didn’t come as a surprise. Bobby was diagnosed with Aspergers’s Syndrome, an autism spectrum disorder. He began to see Dr. Laveman, a developmental pediatrician, who would prove to be a leading catalyst in Bobby’s treatment. For the next five years Eileen and Robert worked closely with Children’s Specialized Hospital in the treatment of their son.

Just as things were falling into place, Bobby experienced a near fatal setback. In June 2011, he suffered a seizure and was rushed to the hospital; shortly thereafter he had emergency brain surgery. Bobby was in a coma for five weeks and had to be placed on a ventilator, receiving his nutrition through a feeding tube. Just as all hope seemed lost, Bobby awoke from his coma but in a far worse condition than before. All the progress he made with his Asperger’s was erased; he wasn’t able to walk or talk on his own. Eileen described his condition as “having a baby in a big body.” It seemed as if Bobby had reverted to his old behaviors.

The intensive care unit doctors at Newark Beth Israel suggested that Bobby transfer to PSE&G’s Children’s Specialized Hospital in New Brunswick. Accompanied by his mother, Bobby would spend the next five weeks in New Brunswick for physical, speech, play, and even pet assisted therapy to lift his spirits. Eileen was overwhelmed with the support she received, and says everyone treated her like family. She recalled being in line at the cafeteria and Amy Mansue, President and CEO, insisted Eileen go in front of her so she could get back to Bobby that much faster. Eileen was awestruck by her actions and said it was nice to see such courtesy from someone who undoubtedly had a million other things to do, but put a stranger’s needs first. The family-centered care that Children’s Specialized Hospital prides itself on never let up, as a Child Life Specialist visited Bobby on a daily basis, and took the time to sit down and talk to Eileen.

“They really knew when to coddle him, and when to ease up and let him do things for himself,” said Mrs. Deegan. Bobby was given a wheelchair to make getting around easier. As weeks passed with more progress, he was slowly returning to his former self, before suffering an acquired brain injury. By the time he was cleared to leave New Brunswick, Bobby showed vast improvements and was fully able to walk, run, and eat on his own. Bobby was welcomed home with balloons and a visit from his grandparents. The first thing he did when home was walk into his bedroom to make sure his room was the same and that no one had touched his trains or Hess Trucks.

That September he returned to school with a classroom aid and thanks to a special social skills class offered at Children’s Specialized Hospital, Bobby was able to leave Eileen without any fuss and make it through a full school day. He even takes swim classes at the Scotch Plains Y with his mom’s help.

Bobby never gave up despite his setbacks. He fought everyday on his road to recovery. Bobby continues to receive physical, occupational, and speech therapy in Bayonne from Ms. Nancy. He is a patient of Dr. Armento and has is seeing Ms. Kristen for Neuro rehab in Fanwood. Bobby is also seeing a neuropsychologist at Children’s Specialized Hospital in Mountainside.

“There is no doubt he is a stronger kid after leaving New Brunswick,” Eileen said. “The level of compassion everyone had was truly unbelievable. It’s hard for me to describe the outstanding professionalism we received during Bobby’s rehabilitation.”

Erin Kelly

teen being helped to walkSomehow, after all that she’s been through, 16-year-old Erin Kelly—with a contagious smile—says she feels lucky.

Erin, a dedicated high-school softball player from Maywood, NJ, woke up one morning unable to feel her legs. Powerless to get up from her bed at home, she was taken by ambulance to Hackensack University Medical Center, anticipating a diagnosis of pinched nerves. Erin’s dad, Jerry Kelly, remembers thinking that his daughter would be back home that night and at softball practice the next day. Erin and her family were unfortunately in for a terrible surprise.

Erin was diagnosed with transverse myelitis, a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord. The term myelitis refers to inflammation of the spinal cord; attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body. Symptoms of transverse myelitis include a loss of spinal cord function over several hours to several weeks. What usually begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet can rapidly progress to more severe symptoms, including paralysis.

Similar to the description, Erin was paralyzed from the waist down. Just one day prior, this vibrant and athletic young girl was at softball practice and eating pizza with a friend. Jerry Kelly remembers this as the most frightening time, not sure his daughter would ever walk again. After a move to Cornell University Medical Center, Erin finally began to wiggle her toes, and hope was born. Or, as Jerry Kelly continually says, “there’s light at the end of the tunnel.”

This quiet and humble high-school junior literally got back on her feet at PSE&G Children’s Specialized Hospital in New Brunswick, where she was staying as an in-patient for approximately three weeks. With help from physical and occupational therapists three hours per day, Erin went swimming, and worked hard on balance and strengthening. Erin also took her “first” steps at the hospital—she essentially had to relearn how to walk. Her motivation toward rehabilitation was so great, that her physical therapists had to force her to rest. Erin is a girl on a mission.

Though she didn’t get to see too much personally, being in the hospital, Erin’s community in Maywood began an outpouring of support. A deluge of fundraisers were organized, ribbons in Erin’s favorite color—purple—could be seen flying around town in her support (Jerry Kelly wears a purple shirt every day!), and a Facebook page (http://www.facebook.com/ForErinKelly) was set up to keep friends, family, and community members updated on her progress.

Erin is still working hard to regain strength and get back to her “normal” routines, things that she says she took for granted—like walking down stairs. Erin’s experience at Children’s Specialized Hospital has inspired her. She’s beefing up on her math and science courses in preparation for the SATs, and maybe, for a career as a nurse.

The great news is that Erin made it home in July. Her physician, Dr. Michele Fantasia, says the staff worked hard so that Erin “would get there walking on her own—without crutches.”

Erin will have future rehabilitation as an outpatient for a year or so, but Children’s Specialized Hospital has had a great success rate with patients like her. Go Erin!

Julia and Mia Paparella

two young girls togetherJulia Paparella, 11, and Mia Paparella, 8, two sisters from Bayville, New Jersey, have come a long way. Mia still receives treatment at Children’s Specialized Hospital in Tom’s River, where Julia was also a patient.

The Paparella family understands the value of quality pediatric care. Julia was diagnosed failure to thrive because of an undiagnosed food allergy and Mia has a sensory processing disorder.

Julia

Julia was born a little smaller than the average baby at six pounds, but was otherwise healthy. However, at her nine-month check-up, a doctor told the Paparellas that Julia had dropped her growth curve. At Julia’s 12-month visit, she dropped again and the doctor was concerned. The Paparellas started their search for answers. Many tests were done, and because Julia’s growth continued to decline, she was diagnosed with failure to thrive.

The next two years were panic-filled for the Paparellas, as they desperately tried to find out what was happening to their daughter. In that time, Julia began to slowly refuse almost all the food offered to her. Several diagnoses were discussed as possible causes, but additional testing revealed that it wasn't any of them. The Paparellas brought Julia to a hospital to be weighed and measured every 3 weeks. At each visit Gina Paparella’s heart would break as she watched Julia scream.

“She would reach her hands out for me to rescue her,” Gina remembers.

The Paparellas endured putting their daughter under anesthesia when gastro exploratory surgery became necessary, as Julia’s significant drop off the growth chart became life threatening. It was discovered that she had many food allergies that caused a baby ulcer and it was too painful for her to eat. Julia’s allergies were undetected because her reaction was happening on the inside; she had sores throughout the lining of her stomach.

The Paparellas were immensely grateful for their experience at Children’s Specialized Hospital because Julia’s nutritionist and feeding team were instrumental in putting her back on the chart. “They were so creative in their discovery of finding what works,” Gina says. “Because of their intervention, Julia was spared a feeding tube.”

As the Paparellas seemed to be getting Julia out of the woods with the feeding issue, another one began to emerge. Julia was developmentally delayed with her speech. She could label things but couldn't put words together. She was approaching her fourth birthday and only had a few two-word utterances. Her speech therapist at Children’s Specialized Hospital never gave up on her. Julia was a bright-eyed preschooler who could only communicate through the sign language her therapist taught her. When she was five years old she began to speak sentences. Julia was diagnosed with central auditory processing disorder at age eight.

Mia

The Paparella’s second daughter, Mia, was a healthy baby girl and growing well. As her toddler years immerged, doctors discovered that she too, had a delay in language capabilities.

But something else seemed different. Mia craved “pressure”; she was constantly jumping and bouncing, which gave her pressure in her feet, along with climbing, which gave her pressure in her hands. Mia could scale a wall with ease. Her siblings called her “spider baby.” Mia also seemed hypersensitive to fabrics as she always wanted to be without clothes. It was extremely difficult to get her dressed.

Gina Paparella remembers life with Mia being challenging at that time.

“We already had very positive experiences at Children’s Specialized Hospital, so we turned to them for evaluation,” she said. “Mia was diagnosed with sensory integration disorder.”

As occupational and speech therapists assisted Mia in leaps and bounds of growth, they also assisted the Paparella family. They taught them what to do at home to continue Mia’s growth when she was not in therapy.

“The therapists’ actions were always above and beyond any expectation a parent can have,” Gina says.

Though Gina Paparella can’t recall the journey she and her family have been on without shedding tears, she knows the sky is the limit for both of her children.

Kendell Jaylin Isons

young boy with helmet onKendell Jaylin Isons is a 6-year-old social butterfly, bopping around Children’s Specialized Hospital in Mountainside. When Kendell isn’t at Children’s Specialized, his favorite activities are playing video games or practicing karate. Kendell is a white belt, and he has high hopes of becoming a black belt—or even a purple belt—one day.

“I want to practice to get stronger so I can take out that guy,” he says with a laugh.

This is a good day. Kendell’s outside, done with his therapy, and is collecting leaves for an arts and crafts project. His mom, Stephanie Isons, a single mom and Army National Guardswoman, is cautioning him not to get dirt on his clothes. Kendell makes friends with everyone who passes by, though most employees know him already.

It’s hard to imagine that such a short time ago, Kendell was in a coma.

Stephanie had just returned home to East Orange. She was only on military leave for two days and was preparing to leave again to deal with impending Hurricane Irene. It was September 26, 2011.

Kendell was always ready to help mom with a project, so the two began to sort through old clothes from dresser drawers, to get him ready before she would be off to serve her country.

Before Stephanie knew what was happening, a heavy dresser (and the TV atop it) became imbalanced and fell onto Kendell’s head. Kendell suffered a traumatic brain injury and immediately became unconscious. Waiting for the ambulance, Stephanie describes that time as the “longest five minutes of my life.” Kendell was rushed to UMDNJ in Newark where he remained in a coma for four weeks.

Kendell suffered multiple skull fractures, which resulted in profuse bleeding and swelling on his brain. When he miraculously came out of his coma, Stephanie remembers being terrified; Kendell couldn’t look at or speak to her.

“It was like having a newborn baby,” Isons said. “He lost all motor skills in his right side and he couldn’t do anything.” After a recommendation by his doctors at UMDNJ, Kendell was transferred to PSE&G Children’s Specialized Hospital in New Brunswick, where he could get the rehabilitative treatment he needed. Staff there determined that he had short term memory loss. He also suffered from sensory impairments, a learning disability, little impulse control, and self-injurious behaviors due to his traumatic brain injury.

After a month of inpatient rehabilitation in New Brunswick, Kendell returned home and began receiving outpatient treatment in Mountainside. With the guidance of therapists, in just six months, Kendell learned to walk and talk again. He even relearned the alphabet. Through personalized play therapy, doctors were able to address Kendell’s functional skill deficits and at the same time, foster his areas of strength. Neuropsychologists helped Kendell cope with his anger from not being able to do what he could do before as an independent child. Frustration was high.

“He remembers where he was, it’s hard for him,” Stephanie said. Stephanie is seeing progress in Kendell’s attention, concentration, memory, verbal communication, organization, social behavior, and visual information processing. These days, Kendell participates in the outpatient brain injury program in Mountainside. This program offers cognitive therapies on-site in a school-like setting to prepare kids who have suffered a traumatic brain injury reenter society.

Kendell and his “team”—as Stephanie refers to it—are also working on building his confidence, and trying all kinds of different techniques. Kendell has to find a new way to process new information.

“It has to be consistent. Teamwork is important, everyone has to be on the same page,” Stephanie said.

Michele Demarest, Kendell’s speech language pathologist, said when Kendell feels frustrated he is encouraged to "use his strategies.”

“He practices deep, slow breathing—we prompt him to ‘smell the pizza and blow out the candles.’ Using this strategy helps him be in control of his emotions, especially when he begins to feel overwhelmed,” Michele said.

Kendell uses a picture schedule to help him plan his day and recall what he will do first, next and last. He is able to choose from a limited number of icons to help him determine which activities he will work on in any given therapy session. Using this strategy helps him stay organized, manage his expectations and avoid temper tantrums.

Although her son occasionally has a bad day, Stephanie praised the team for not rushing to simply medicate her son—putting a band-aide on his wound.

Kendell realizes that there are things that are hard for him now that used to be easy. Although he would rather do things on his own most of the time, he is beginning to open up. Kendell is praised when he is brave enough to ask for help and accept it.

Stephanie says it’s important to remember that in December 2011, Kendell was in a wheelchair.

“I’m grateful for what he’s accomplished, and the care he’s received at Children’s Specialized. I’m waiting to see what the future will bring.”

Stella Kincos

toddler swimmingMeet Stella Knicos from East Windsor. She's a feisty 3 year old who is surviving a rare condition called Pompe Disease. The condition, which causes progressive muscle weakness and can lead to respiratory failure, was once thought to stop most infants from reaching their first birthdays. Not Stella.

This energetic and charming preschooler is always ready for an adventure. Each day she undergoes a combination of intensive enzyme, physical and occupational therapies, and manages to do so with a smile.

At 5 weeks old, Stella’s condition was discovered after the family’s doctor noticed a problem with her respiratory system. “He said she was too young to be wheezing that badly. I thought it was just a bad cold,” said Stella’s mother, Jacqui Knicos. Following the appointment, an urgent echo ultrasound revealed Stella had an enlarged heart and was diagnosed with Pompe Disease. Immediate diagnosis improved her chance of survival and presented opportunities for treatment, but Stella and her family would face challenges everyday. By the time she was 7 months old, Stella’s heart returned to normal size; now at the age of 3, Stella is able to thrive with the help of weekly enzyme infusions at St. Christopher’s Hospital and outpatient therapies at Children’s Specialized Hospital.

Most of Stella’s time at Children’s Specialized Hospital is spent in the pool for aquatic therapy; her physical therapy supervisor Sanda Nussenfeld has seen great improvements in Stella’s ongoing rehabilitation. “Her training in the pool has greatly improved her balance out of the water,” said Nussenfeld. “She doesn’t give up. If something is physically exhausting for her, she may get angry with you, but she always comes back like it never happened. She knows she is here to do her little job, and she knows how to hug you to get out of things,” said Nussenfeld.

As treatments and medical advances for Pompe Disease continue to develop, Jacqui Knicos holds great hope for her energetic daughter. “I know it’s going to get better,” she said. “She’s a fighter, and she’s our miracle.”

Patient Stories

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Patient Stories

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