“I’ve never seen anybody so happy to be alive, and love just exuberates out of him. It’s infectious to everybody that comes in contact with him. His energy, his spirit, his drive, his determination. I mean, we’re blessed to have him as a child,” Ronald said. Jeremiah has come a long way, thanks to the support of his family. His parents demonstrate tenacity in helping Jeremiah live a happy and deserving life.
Since Jeremiah’s birth, he has faced challenges. Lisa originally was suppposed to be induced at 37 weeks due to gestational diabetes. She didn’t think it would be a problem, as she had received the same diagnosis during her first pregnancy, and was induced at 38 weeks. But in October 2020, Jeremiah was induced prematurely at 35 weeks, due to a doctor’s miscalculation. Jeremiah was diagnosed with jaundice as a result of his premature birth. He received light therapy for a day and a half to alleviate his condition, while Lisa was discharged from the hospital. Looking back, Lisa believes Jeremiah should have been under the special blue lights for a longer period.
When Jeremiah was around two months old, Ronald and Lisa began to notice concerning symptoms. Jeremiah had limited movement in one arm and would clench his fist. Later, he began to arch his back, and cry out in pain. One day when Jeremiah was about 6 months old, Lisa’s mother was watching Jeremiah and alerted Lisa, “I don’t like the way Jerry looks. There’s clear liquid running out of his mouth,”. It was then that Ronald and Lisa decided to take Jeremiah to the pediatrician. It was then that Ronald and Lisa decided to take Jeremiah to the pediatrician. Once Jeremiah was seen, Ronald and Lisa were told to take him straight to the emergency room. At the ER, medical staff ran tests on Jeremiah to make sure he was not having seizures, including an MRI of his brain.
“We said to the doctors, ‘Just tell us what’s going on. We can tell by your face something’s up.’ They didn’t tell us what was wrong. They just said, ‘Oh, he has some mild abnormality on part of his brain,’” Lisa recalled.
They were told Jeremiah needed to be placed in early intervention therapy, as well as physical, speech, and occupational therapy. Since the Starks family were receiving very vague answers from doctors, Lisa began to compile her own research regarding Jeremiah’s symptoms. “What could go wrong if jaundice isn’t treated correctly?” she wondered. Lisa continued to push for a diagnosis, as she needed an official diagnosis to try and apply for assistance such as SSI or Medicaid. When he was about one year old, Jeremiah received his Auditory Neuropathy diagnosis after his hearing was tested by an audiologist. When Jeremiah was two years old, he was officially diagnosed with cerebral palsy quadriplegia.
Today, Jeremiah is four years old and attends a special needs school five days a week. At school, he attends physical, speech, and occupational therapies three times a week, plus hearing therapy (although not provided by the school). Outside of school, he attends feeding therapy. Jeremiah’s favorite class at school is gym, where he plays baseball, basketball, and football. His favorite hobby is bowling. He also enjoys playing sports games on an AAC communication device which tracks Jeremiah’s eye gaze so he can communicate. Lisa told Jeremiah’s school teachers, “Jerry’s probably bored at home, you guys have all the cool stuff!” The Starks family is working on getting one of these devices for Jeremiah at home, although it is very expensive.
As Jeremiah grows older, the Starks family notices that he is more aware of his physical limitations. Regardless, Jeremiah is very determined and will not give up. “When we hold him up to run or walk, he’s like ‘Get off of me. Let me go. My legs are moving. I can do it,’” Lisa said.
Lisa and Ronald Starks spoke about their biggest obstacles as parents of a child with a disability. “I think the biggest obstacle for us right now is making sure Jeremiah gets everything he needs,” Lisa said. Lisa described the challenges she encountered when seeking financial assistance for Jeremiah. “Here in New Jersey, if you're working, it’s hard to qualify for any assistance or help. We usually go to different organizations that will help us pay for certain things, but there are still items we need. It’s just that the cost is so expensive. We have insurance, but the insurance doesn’t cover everything,” Lisa said.
Lisa and Ronald experience stress over finances since they do not qualify for SSI or Medicaid. This is a growing concern for them. The older Jeremiah gets, there are more equipment and technology available for him to use, but these can be expensive. Currently, Jeremiah needs a bath chair. Before long, the Starks also will need a van and a built-in ramp for the home. Jeremiah also needs a new bed. The family was recently told they could be provided a hospital bed, but that would not be safe or adequate for his needs. The lack of available resources that cater to Jeremiah’s disability is alarming.
Along with this, both Lisa and Ronald are working parents. Lisa discussed how she and Ronald coordinate transportation. “I have the support of my boss who is very supportive and makes allowances for me to do those things. It’s having the flexibility with my work to take Jeremiah to therapy. But it’s a lot. It is very taxing, and Ron’s job is not as flexible, so a lot of it falls on me to make sure that he gets to all his therapies and everything on time,” Lisa explained.
The Starks family have found great support at the special needs school Jeremiah attends. Lisa and Ronald connect with parents and school staff, especially the school social worker, to share resources and emotional support. “We’re a little community now. There were people, like the audiologists and early intervention staff, who were very supportive. They were trying to get us into a support group, but I think at the time it was just too much. Joining a support group that met online helped us with services, things that we can do, and what we should look out for,” Lisa said. The early intervention staff helped Lisa and Ronald prepare Jeremiah for a special needs school. “There's a process where you get the district to pay for them to go, and they were instrumental in helping us with that piece,” Lisa explained.
Jeremiah’s older sister, Sariyah, is almost nine years old and attends a support group for siblings of children with special needs. The group meets at Jeremiah’s school, where Sariayah and the other children can walk around and see the classrooms and the special equipment their siblings use. The children can ask questions and observe other siblings going through similar experiences. The group has been a great resource for Sariyah. She had questions about her brother such as “Why can’t Jerry run? Why doesn’t he talk? When will he talk?”
The group explains Jeremiah’s condition in an age-appropriate way, and now Sariyah comes home excited to share statements such as “Other kids feel the same way. I saw where Jerry goes to school, I love his school.”
Ronald and Lisa Starks shared advice for other families who may be struggling to find the right answers and resources for their children. “Don’t ever give up. Continue to advocate for your child. Doors may close in your face, you keep knocking on that door. Go around the door if you have to. Go through the door if you have to. As Jeremiah demonstrates, never give up.”
Lisa also addresses parental intuition, and why it is important to act on it. “When you have that hunch that something’s not right, follow it. Follow that intuition that’s telling you that something’s wrong. Don’t let up on it. Don’t be afraid to challenge doctors and do not feel like they know everything. You are definitely allowed to ask questions. You’re allowed to switch doctors if you’re uncomfortable with certain people. Always advocate and find an answer. Look for support and find your village that can help you and support you. It’s not the end of the world. It’s okay to feel whatever you’re feeling. Process those feelings. But always look at the bright side,” Lisa shared.
Ronald reminds readers of the duty parents have to fight for their children. “Remember your child is counting on you. You have to be his mouthpiece. You have to fight for him because he can’t fight on his own. This is a journey. You’re going to have ups, you’re going to have downs. The final destination is seeing it through. Stay the course,” Ronald said.
Despite setbacks and challenges, the Starks family is unrelenting in their fight to ensure Jeremiah has all the resources he needs to thrive and live a fulfilling life. “As long as we have breath in our body, we will continue to advocate for our child,” Ronald stated.
Ronald and Lisa followed their intuition, continued to ask questions, and searched for second opinions when medical staff were unclear or vague on Jeremiah’s diagnosis. They completed research to better understand Jeremiah’s condition. Due to their relentless efforts to find answers, they received a diagnosis and are on their way to finding more in depth diagnoses for Jeremiah and continued resources to support his needs.
ABOUT THE AUTHORS:
Nicole Rosales is a Senior at Montclair State University studying Public Relations, and has a minor in Business. She is a student intern for EP Magazine through Hawk Communications and an editor for Her Campus Magazine. Nicole is a passionate writer who appreciates the strength and power of storytelling. She aspires to pursue a career in writing post-graduation.
Bridget Reed is a Senior at Montclair State University studying Social Media and Public Relations. She joined EP Magazine as a student intern in January 2025 through Hawk Communications, a student-led public relations agency, taught by MSU Professor Keith Green. During her time with EP, Bridget created graphics for the magazine’s social media accounts and reached out to organizations to spread the news that everyone interested can sign up for EP for FREE!
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