Putting a lid on children’s cancer

Friday, December 2, was Hats On Day at Matheny. All staff members and students were asked to wear hats to raise awareness about children’s cancer. Boxes were distributed around the facility for both hat and monetary donations, the latter to be sent to the Foundation for Children with Cancer.

A group of eighth graders from the Madison Junior School visited Matheny and helped students design special hats and collect money. The effort raised more than $200.

Above, Madison Junior eighth graders Diane Moore, left, and Desta Johnson made a hat for 16-year-old Matheny student Daniel Gaudreau.

Below, Madison Junior eighth graders Taylor Camp, left, and Ellen Magnier with 10-year-old Matheny student Katherine Gaudio.

Even though Michael Taurozzi can’t speak, can’t walk and has limited hearing, his teacher, Christina Carey, believes Michael’s greatest qualities are “his smile, laugh and sense of humor. He loves to interact and verbalize with his peers and he is always looking for a good laugh.”

John Taurozzi believes his son is so happy because “the people at Matheny treat him with so much love and care. That’s the difference here. It’s not just the medical benefits that the school offers. It’s each and every one of the nurses and the physical therapists and the occupational therapists and the amount of love and care they give these students.”

Everyone who knows Michael remarks about his love for music, which is confirmed by his music therapist, Alissa West. “Mike,” she says, “lights up in music therapy. He loves hearing new sounds and laughs when he hears the instrument sounds he likes best. He likes moving to upbeat rock songs and vocalizes during improvised music. He also seems to like deep vibrations made by instruments such as the bass bars or a buffalo drum. And he giggles when he hears and feels them.”

His father points out that Michael’s strongest sense is his hearing. “If he’s home and it’s quiet, and I see him open up his eyes and lift his head, I know something’s up. One thing about Michael – he absorbs the environment. That’s why Matheny is such an amazing place for him. It’s upbeat and positive.”

“When Michael was home,” his mother, Janice recalls, “I would spend three hours just feeding him. I’m so happy he’s here. You know when you walk in, it’s the right place.” Matheny, adds Michael’s grandparents, Jack and Elaine Brunner, “has given our whole extended family serenity and faith back.”

Michael will be featured in our Annual Appeal brochure. Look for it in the mail in the coming days.

Above: Michael and his teacher, Christina Carey.

When Michael Taurozzi, now 18, was still in his mother’s womb, he had a stroke, which seriously affected one side of his brain. However, after spending more than 11 years as a residential student at Matheny, there is, in the words of his mother, Janice Taurozzi, “a big difference in Michael. He can comprehend now. He knows when we’re here. He knows when he’s in the classroom. He loves going to the mall, and he loves going to the beach.”

Though he can’t speak, has limited vision and can’t walk, Michael has a contagious smile that lights up a room.  But, “the astonishing thing,” says his father, John Taurozzi, of Randolph, NJ, “is when I go into his classroom, and they ask him, ‘Michael, which color is red?’ He goes to the button and picks the right one. It just blows me away that he can do that.”

For more about Michael, watch your mail for our Annual Appeal brochure.

Above: Michael and his mother, Janice Taurozzi.

Holiday Express, an all-volunteer band whose mission is to deliver music, food, gifts, financial support and friendship to those in need during the holiday season, will make its annual visit to Matheny on Sunday, December 11.

The Monmouth County-based organization is made up of about 1,300 volunteers including more than 80 professional musicians. Founded in 1993 by restaurateur and musician Tim McLoone, Holiday Express visits some 50 institutions every year between November and the end of December. The band also performs every May at the Matheny Prom, held at the Skylands in Randolph.

While most of the band members are from Monmouth County, there are some local participants: Byron Smith from Bedminster, Alan Grant from Bridgewater and Anthony Perruso from Rockaway. In addition, a Matheny parent, Jim Yedloutschnig of Cedar Grove, whose daughter Alicia, is an adult patient, often joins the band’s trumpet section.

Matheny students, patients and their families look forward to the Holiday Express event every year. Highlights include participation by the Matheny Choir, the signature HE song, “Nobody Ought to Be Alone on Christmas” and the group competition on “The Twelve Days of Christmas.”

The concert will be held from noon to 2 p.m. on Sunday, December 11, in the Robert Schonhorn Arts Center on the Matheny campus in Peapack.

Above:  Holiday Express band member Byron Smith with his daughters, Courtney, left, and Jordan.

Below: Matheny student Bryan Desatnick with the Holiday Express dancers.

When he was 17, Matthew was hospitalized for six weeks as the result of a decubitus ulcer, a bed sore that develops from lying or sitting in one position too long. “It was sort of God’s way of telling us we couldn’t handle his medical problems anymore,” says his father, Don. Four months later, Matthew was admitted as a resident at Matheny. “It wasn’t easy,” says his mother, Marie, “but we know this is where he needs to be. It’s just a phenomenal place.”

Adds his father: “Everybody’s so professional, caring and competent. Everybody knows Matthew’s name. We can’t believe it.”

“Everyday,” says Marie, “we thank God for the people who work here and for the passion they have for our child and everyone else.”

Matthew, one of nine “Special Stories” we’ve highlighted in our new publication, which you can download here.

For the third consecutive year, Matheny will be receiving a Percy Award from the Healthcare Planning and Marketing Society of New Jersey for Best Small Hospital Public Relations/Media Placement. This year’s awards will be presented at HPMSNJ’s annual meeting on December 9 at the National Conference Center of East Windsor in East Windsor, N.J.

Matheny’s award is for its partnership with CBS New York television and radio stations to promote Miles for Matheny, an annual fundraiser and community event, held April 17. WCBS-TV Channel 2 provided on-air news coverage, aired a public service announcement featuring news anchor Don Dahler, placed it on the CBS New York website and promoted it among its employees.

In addition, WCBS Newsradio 880 produced a video of Matheny’s visit to the Clinton, N.J., Public School to demonstrate the use of adapted physical education equipment. The video, featuring news anchor Wayne Cabot, appeared on the station’s website. The audio was played on-air, followed by live promos for Miles for Matheny.

HPMSNJ is the local chapter of the Society for Healthcare Strategy and Market Development (SHSMD). Started in 1979, HPMSNJ serves healthcare planning, marketing and public relations professionals in New Jersey and surrounding states.

Above: Matheny presents “Certificates of Appreciation” to WCBS-TV.  From left, Steve Proctor, Matheny president; Kevin Ralph, Matheny chief development officer; Peter Dunn, president, CBS Television Stations; Don Dahler, WCBS-TV news anchor; and Eric Berlin, WCBS-TV weekend producer.

Below:  WCBS Newsradio 880 presentation, from left: Kevin Ralph; WCBS Newsradio anchor Wayne Cabot; WCBS Newsradio news director Tim Scheld; and Steve Proctor.

The Matheny Muses, an eclectic group of young artists and performers from Matheny’s choir, performed Lady Gaga’s “Just Dance” at the 9th annual Express Yourself New Jersey. The event, held November 13 at the Montclair Art Museum in Montclair, NJ, was sponsored by ArtWorks: The Naomi Cohain Foundation.

The Matheny Muses selected “Just Dance” in order to share their love for singing, dancing and playing music, hoping it would inspire the dancer within everyone. Although the Matheny students are all in wheelchairs, they feel music reminds them not to sit in defeat but to move to the music, making them feel as if they were back on their feet. The Music Therapy program at Matheny uses various types of music to enhance and improve students’ and patients’ cognitive, physical, emotional and social skills, helping them realize their potential in society.

ArtWorks, the event’s sponsor, provides children and young adults suffering from chronic and life-threatening illnesses, and their siblings, access to creative and performing arts programs that encourage the use of the creative process as a vehicle for healing, communication, self-expression and personal development. Express Yourself is a creative and performing arts exhibition that provides these children and young adults with an open and loving forum to express themselves through the arts. In a safe environment, filled with families, friends, healthcare specialists and ArtWorks supporters, these children sing, dance, recite poetry, play instruments and stand proudly by their works of art.

Above: Music therapist Megan Chappius conducts the Matheny Muses as they perform Lady Gaga’s “Just Dance.” From left, students Yasin Reddick, Bianca Mathis and Jameir Warren Treadwell; music therapist Greg Perkins; and student Najee Rogers.

Below: Matheny student Bozena Geraghty uses her feet to play the keyboard, assisted by music therapist Alissa West.

James, who has cerebral palsy, was admitted as a resident at Matheny in 2003, just before his 10th birthday. James can’t walk or talk, but according to his mother, Cathy, “He seems to understand everything.” He has learned to communicate using interactive symbols on an electronic augmentative communications device. “He’s a very smart kid,” says his teacher, Peggy Zappulla.

Having James reside at Matheny has increased the quality time he’s able to spend with his mother and sister. “When your child is happy and comfortable,” says Cathy, “you can enjoy him instead of only caring for him all the time.”

James is one of nine “Special Stories” we’ve highlighted in our new brochure, which you can download here.

When his mother, Estela, first brought Nicholas to Matheny, he could not stand up, and his body was floppy. Nicholas has Lennox-Gastaut syndrome, a severe form of epilepsy. Since then, physical therapists have been working with him on standing and stepping, sitting, posture and trunk strengthening.

Occupational therapy concentrates on trying to get him to reach and explore his environment with his hands. Speech-language pathologists work with him to use switches in order to communicate on a basic level. And Matheny’s seating and mobility clinic designed a chair that is a hybrid between a stroller and a wheelchair.

Today, says Estela, “His legs are stronger. He’s very alert. He’s saying some words. He’s eating well.” And it’s all due to his therapists: “I love the way they treat him.”

Nicholas is one of nine “Special Stories” we’ve highlighted in our new brochure, which you can download here.

Kaila was born with spina bifida and a condition called cri du chat syndrome, a rare genetic disorder causing intellectual disability and delayed development. When she was 14 years old, her parents, Tad and Kim, decided Kaila had outgrown her special services classroom in her public middle school.

Their goal was to help her be as independent as possible. That is being accomplished at Matheny. “She can feed herself and move from room to room in her wheelchair without our help,” Kim says. “And, though she is not very verbal, we can see how happy she is. It’s just amazing the love the staff has for our child.”

Kaila is one of nine “Special Stories” in our new brochure, which you can download here.

At birth, Jenna seemed fine. But when she was one year old, an MRI revealed some brain malformations, and at about 18 months, an EEG uncovered Lennox-Gastaut syndrome, a severe form of epilepsy.

The therapists at Matheny, says her mother, Lauren, “are doing a great job with her.  They have worked really hard to find just the right setup to support her. The therapists at Matheny are very devoted. They’re very creative. And they don’t give up.”

Jenna is one of nine special stories in our new brochure which you can download here.

Whitney Weldon is not your typical Georgetown University freshman.

In April 2001, then-9-year-old Whitney was diagnosed with fibrodysplasia ossifcans progressiva (FOP), a rare genetic disorder characterized by the abnormal growth of bone in soft tissue. In cases of FOP, muscles, tissues and ligaments actually develop into bone, progressively immobilizing the patient.

In March 2011, as Whitney was getting ready to enter Georgetown University in the fall, she and her parents, Bill and Hilary Weldon of New Vernon, visited Matheny. Whitney’s mobility was extremely limited, but she was not able to use a conventional wheelchair. She and her parents were hoping therapists and rehab technicians could evaluate her for adaptive equipment that would make her adjustment to college easier.

Matheny recommended the Permobil C500, a front wheel-drive power wheelchair with a standing feature. “This model allows the seating system to come up to meet her,” according to Jon DaSilva, Matheny rehab technician. “And we added custom foam in places to help with her comfort level.”

At first resistant to using a wheelchair, Whitney has since grown to embrace it. “I’m doing great,” she says. “I can get around faster than if I were on foot, and I have the freedom to get out of it if I want to.” Some of her early reluctance, she admits, was because she worried it would be a deterrent to meeting new people. But the wheelchair, she says, has actually contributed to the fun of the college experience: “I can get places quicker. People don’t have to wait for me. I have to wait for them now.”

Permobil, based in Lebanon, TN, develops, manufactures and markets power wheelchairs and transport and communication systems for people with functional disabilities. DaSilva says Stephen Burke, Permobil’s representative in northern New Jersey, “has been a huge resource for us, not just with Whitney but with other clients as well.” Whitney appreciates that Matheny has given her a Permobil contact in the Washington, DC area. “If I have a problem now,” she says, “they will send someone to make any adjustment I need.”

While Permobil can be a huge boon for FOP victims, there remains a tremendous need for research funding for the disease. The Weldon family, through the Weldon FOP Research Fund, has raised awareness and millions of dollars for the FOP Laboratory at the University of Pennsylvania School of Medicine. To learn more, visit the Weldon Fund.