Information about spinocerebellar ataxia is limited. According to the National Ataxia Foundation, “It affects about 1 to 5 people per 100,000. SCA 10 is caused by genetic defects that lead to impairment of specific nerve fibers carrying messages to and from the brain resulting in degeneration of the cerebellum, the brain’s coordination center.” For individuals with this disease, the brains struggles to control movement, balance, and coordination. They may experience difficulty walking, speaking, or swallowing. Seizures can also occur, particularly during the early stages of the condition.
Although there is no specific treatment to delay or halt the progression of SCA 10, physical therapy assists with maintaining current functions, according to the National Ataxia Foundation.
Jeremiah is now physically dependent on his parents. He began showing symptoms at the age of four. In preschool, he struggled with self-awareness and his surroundings, often tripped over objects, at times would shy away from the class, and showed incorrect use of his hands during artistic activities. After being evaluated by the public school child study team, he entered kindergarten as a special needs student with a language and learning disability. It was thought that Jeremiah was experiencing developmental delays, and therapies were provided. Three years later, after visiting a neurologist, his condition was confirmed. The confirmation came as a result of performing a triple MRI, picturing the brain, cervical, and lumbar parts of the spine.
“I’m going to be honest,” said Jeremiah’s mother Lisette Feliciano. “When we got his diagnosis, as a mom I never really had the time to sit and dwell on what the diagnosis was. I had to jump into action. What are we going to do now, what type of services do we have to get him? It was tough at the beginning, because it is a diagnosis that we don’t know much about. While his doctors are treating him and learning, we are learning at the same time.”
Jeremiah was referred to Dr. D’Alessandro, Clinical Director of the Kireker Center for Child Development. Here, he has continued to partake in different types of therapies to maintain his mobility. At the age of 7, Jeremiah was mobile, but needed the use of a posterior walker due to complications of an unsteady gait. As his condition progressed, he became wheelchair bound. The Feliciano family goes above and beyond to help Jeremiah maintain his current range of motion. Doctors have told them that his mobility may decline. The family remains committed to providing him with the best possible quality of life.
After a few years in the public school system, Jeremiah’s mother realized that he had outgrown the available services, and needed more advanced support, particularly in physical therapy. “I needed a parent advocate to guide me through the process,” Lisette shared. She noted that it was Jeremiah’s second-grade teacher who encouraged her to seek better educational opportunities for him. By the summer before third grade, Jeremiah was transferred to a specialized, out-of-district school for students with special needs. Today, he receives all the support he needs, as often as he needs it. The family has received tremendous direction from physicians and teachers guiding them towards the correct steps to ensure he receives everything he needs.
Although Jeremiah’s speech is often not understood by others, his family often understands him. At school, they are using a repetition method in the classroom. If they can’t understand him from the start, they try 2-3 times to see if he sounds clear enough to be understood. If that doesn't work, they have several topic cues they use to see if they can pinpoint what topic he’s trying to communicate. They are also working with computer software that is used with a joystick switch, which he works quite well. It allows him to piece together what he wants to say via picture cards with names. This software can also be used by eye-gazing to select the picture cards. The teachers want to see if he would benefit more from using the joystick vs. an eye-gazing augmentative device, because using his eyes all day can become tiring.
Despite facing unique challenges in caring for Jeremiah, the Feliciano family remains resilient and dedicated. Jeremiah has a condition called dysphagia, which requires specialized attention. It affects his ability to use his oral muscles, making swallowing difficult. This can occasionally result in drooling or choking. Lisette and her family have become skilled at managing these moments. During her daily routine when Lisette takes her second child Destinee to the bus stop, she trusts the support of Jeremiah’s grandparents, yet is still eager to return and assist if needed. Another aspect of their journey involves helping Jeremiah with his bathroom needs, as he requires physical support to move. Although this can present challenges in public settings, the family has developed strategies to ensure Jeremiah’s comfort and care.
The Feliciano family emphasizes the importance of thoroughly exploring the education system to find the best resources for children with special needs. They encourage parents to trust their instincts when assessing whether their child is receiving the appropriate services, and to advocate for better options, if needed. It’s crucial to research and discover what support is available. For the Feliciano family, enrolling Jeremiah in a school tailored for children who require specialized accommodations has been valuable. There are organizations dedicated to parent advocacy, providing an additional layer of support, and they have been beneficial to the Feliciano family. A parent advocate provides information about options, available resources, and support services that parents may not be aware of. A parent advocate should understand the intricacies of special education and the assistance available at the state level.
“Ihave to say, having that support helped us navigate that initial period and still helps us now” said Lisette. “His school has always been very resourceful, and they’ve given us different types of avenues to try to get what he needs. I am thankful that he is where he is. He is still wheelchair bound, but he is maintaining what he has. I think a lot of that has to do with the fact that he is in that school. Sometimes, it’s hard for a parent because they may not know how to navigate their situation and fight for their kids' needs. Parents are their kids' number one advocates. There are times when you have to be a bit forceful and demand certain things. Otherwise, you won't be able to get your kids what they need to move forward.”
Thanks to these valuable resources, Jeremiah has had the chance to participate in several exciting activities. During his elementary school years, he competed in Special Olympics bowling. Today, he proudly owns several medals and trophies for his achievements and participation. It was a joyful experience for the family to see him included in these activities, and to witness how the programs creatively adapted the sports to meet the players’ needs. Jeremiah loved being part of the sport. He attended practices twice a week to prepare for competition. Starting at the sectional level, he progressed all the way to the state level showcasing his talent.
Lisette has a great family support system that includes her husband, daughter, mom and dad. Her dad has extended himself from day one. When Jeremiah was first diagnosed, his father, David held a job that did not allow him to be available when Jeremiah left for school. Before they got a stair lift installed in the house, Lisette’s father carried Jeremiah down, put him into his stroller, and helped get him ready for the bus. Later in the afternoon, he carried Jeremiah back up the flight of stairs. Jeremiah and he have a close bond. Family has definitely been a great support. The church that they attend has always been a big support in an emotional and spiritual sense.
The Feliciano family has experienced incredible blessings through their support systems. This past year, David was invited to be a four-day guest speaker at a church in Pennsylvania. He had to make the two-hour drive back and forth each day, as he was needed at home to help care for Jeremiah. Moved by this, the church’s pastor approached David with an unexpected opportunity. A handicap accessible vehicle had recently been donated to the church for community use. The pastor felt compelled to reach out to the donors and ask if the vehicle could be given to the Feliciano family instead. Seven months later, David was again invited to speak at the church. The day before David left for the trip, the Pastor called to tell him to bring an extra person with him because his family would officially be receiving the fully handicap accessible vehicle.
Jeremiah is much more than a young man living with Type 10 Spinocerebellar Ataxia. He is caring, patient, kind, and the owner of a smile that lights up the room. His favorite hobby is watching TV, where his compassionate nature shines through as he roots against the villains from his side of the screen. Whether he’s watching Bubble Guppies, Peppa Pig, or Paw Patrol, Jeremiah always stands up for what’s right, offering encouragement to characters in need. He also lovingly cares for his extensive collection of over 40 stuffed animals, each one individually named and cherished. Some of his favorites include: Froggie the Frog, Mr. Pickles the Dinosaur, Chessie the Monkey and, of course, Mickey Mouse.
His kindness extends into his daily life where he demonstrates his caring demeanor and determination by helping his parents as much as he can or, as he calls it, “doing small jobs.” Using the mobility he has, he enjoys tasks like: taking off his own hat, unzipping his jacket, and choosing his clothes when given options. Jeremiah also loves playing his bells during church services, assisting the musicians with their tunes.
We hope this story inspires others, whether facing a similar situation or not, to recognize the importance of a strong support system. Remember, you are never alone, and keeping a positive outlook can make all the difference. Your next blessing could be just around the corner.
ABOUT THE AUTHOR:
Hailey Ocasio is a senior at Montclair State University, majoring in Advertising with a minor in Sociology. This semester she enrolled in a class called Hawk Communications where, under the guidance of Professor Green, she had the incredible opportunity to work with Faye Simon Harac on Exceptional Parent Magazine. During her time with the magazine, she was excited to propose the idea of interviewing the Feliciano family. Hailey feels truly grateful to be part of this issue and wants to thank everyone involved for this amazing experience!
Read the article here.