Finding Community and Hope at CSH!
Zach’s Story
For Zach’s parents, Lena and Hugh, Children's Specialized Hospital (CSH) represents hope for their six-year-old son. Initially presenting as a healthy baby, Zach began missing developmental milestones around seven months old. The delays, coupled with his larger-than-average size, gave them cause for concern and they began searching for the help their son needed. When Zach was around one-year-old, he started early intervention services, but he still battled challenges like limited mobility and delayed speech.
Feeling dissatisfied with Zach’s progress, his parents sought a better option and ultimately discovered CSH. Zach was seen by Dr. Aronsky at CSH’s Union location for primary care and began recommended physical therapy. “Dr. Aronsky has given us so much hope,” Lena shared. “He may not have all the answers yet, but he is genuinely invested in Zach’s well-being. He stays up day and night researching and listens to our concerns—that's all we can ask for.”
While Zach has not yet received a formal diagnosis, his parents believe that with the support of the expert physicians at CSH, answers are on the horizon. The uncertainty of not having a diagnosis has been the most challenging aspect of their journey, but Dr. Aronsky has been relentless in exploring every possibility.
Zach recently underwent Whole Genome Sequencing, which thoroughly analyzes the DNA for abnormalities. This testing came back “normal”. The next steps for him are to enroll with the Undiagnosed Disease Network for further investigation.
“Children with definitive diagnoses usually have someone to turn to and specific organizations supporting them,” Lena noted. “Children’s Specialized has given us that community and peace of mind.”
As the leading pediatric rehabilitation hospital in the country, CSH employs the latest technology and state-of-the-art equipment to provide exceptional care to kids facing unique health challenges. The Spider Cage, a physical therapy device designed to enhance balance and coordination, and the LiteGait, which provides support during activities and gait training, are often used during therapy sessions for children with limited mobility. These tools have become essential in Zach’s development, helping him make significant strides since coming to CSH. The hospital has provided a clear treatment plan and provided referrals to eleven specialists to rule out various concerns.
Though his speech is limited, Zach has found new ways to communicate. He expresses excitement by flapping his arms, rocking back and forth, making eye contact, and saying short phrases like "mama" and "go go go." His love for Christmas shines through as he joyfully says "ho ho ho." He also delights in music, particularly enjoying when his parents sing “Jingle Bells” and “Happy Birthday” any day of the year. Zach has a warm personality that brightens the day of everyone around him, especially at school.
Lena’s experience with Zach at CSH inspired her to help others by creating the Central Jersey Special Needs Community on Facebook, which has grown to over 1,000 members. This online group bridges gaps between parents and caregivers of children with special needs and developmental delays, providing a platform for sharing valuable information and resources—much of which Lena learned from social workers at CSH.
Lena has also been inspired by her family’s journey to be a voice for other children and persons with disabilities and special needs. Her efforts include advocating for full sized changing tables in public spaces, interabled playgrounds and play spaces, increasing awareness to accessibility in the community, and authoring an anger management workbook for moms and mental health therapists.
As Zach grows, lifting him has become more challenging for his parents, but they remain devoted to providing him with the best care. With his happy temperament, Zach continues to light up the lives of those around him including his grandmother and staff members at his school who play a huge role in his day-to-day care.
With CSH's support, Zach is gaining confidence in his assisted steps and will soon receive a new ankle-foot orthosis (AFO) to improve his stability. Lena and Hugh had previously sought AFOs elsewhere but found the quality inadequate compared to CSH.
“We're not going to go anywhere else,” Lena declared. “We’ve tried other places, but it’s not worth our time and money. CSH has become our trusted partner in navigating Zach’s primary care and therapy needs.”
Thanks to Children's Specialized Hospital, Zach's journey is filled with hope, progress, and a supportive community that empowers both him and his parents every step of the way.