‘All the doctors here take care of him’

Nicholas Barros with Sara Osman MD, physiatrist, and J. Andrew Bowe MD, pediatric orthopedist.

Eleven-year-old Nicholas Barros was born with a condition called Lennox-Gastaut syndrome, a severe form of epilepsy. As a result of this condition, Nicholas has major medical issues relating to his weak joints and the need for support.

His mother, Estela Perez of Bernardsville, NJ, brings him to the Matheny Center of Medicine and Dentistry (MCMD) to see the pediatric orthopedist and physiatrist, as well as the dentist. “If the clinic weren’t here,” she says, “I would have to go from hospital to hospital. All the doctors here take care of him.” And if there’s a service Matheny doesn’t have, “the put me in touch with other doctors,” says Perez. “They don’t just leave me alone.” Nicholas also makes regular visits to the MCMD’s seating and mobility clinic, where adjustments are made to his wheelchair, and where, says Perez, “they have provided me with information that helps us make our house more accessible.”

The MCMD specializes in healthcare for people with mild to severe developmental and intellectual disabilities in an outpatient setting. It gives more than 800 New Jersey kids, teens and adults with disabilities the best outpatient medical, dental and therapy care possible.

Nicholas attends The Matheny School, and his school physical therapist, Elizabeth Hess, accompanies him and his parents during visits with the orthopedist and physiatrist. “It prevents important information from being lost,” Hess explains. “It allows me, after hearing what the doctor says, to go over it with Nicholas’ parents later, because sometimes it’s hard to take in all at once everything the doctor says.”

Insurance covers less than 50% of the cost of care in the Matheny Center of Medicine and Dentistry. Your contributions to Matheny’s #GivingTuesday campaign will make certain that those with the greatest need continue to get the support and services they deserve.

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Estela Perez and Nicholas in the waiting room.

A multi-therapy approach that works

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.

Therapists who don’t give up

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.