This “Little Fighter” Inspires Everyone to Focus on Possibilities – Troy’s Story of Living with Spastic Quadriplegia Cerebral Palsy
Troy Jarrell was born prematurely on August 17, 2012 at 29 weeks and weighed only 2 pounds 6 ounces. Troy battles cerebral palsy (CP). Cerebral palsy is a neurological disorder, in which there is injury to the part of the brain that controls muscle movement. It can occur in the womb, at birth or up to 3 years of age. The most common cause is complications of premature delivery resulting in either lack of sufficient oxygen to the brain or bleeding into the brain. Forms of cerebral palsy range from mild to severe. In Troy’s case, periventricular leukomalacia, or white matter, also interfered with the brain’s development. Depending on the distribution of the brain damage, various parts of the body can be involved. All the way from just one limb called monoplegia, to arm and leg on one side, hemiplegia, to both legs, and diplegia, to whole body, which is called quadriplegia.
The type of cerebral palsy Troy has is called spastic quadriplegia, and Troy has tightness in all four limbs. Troy also has infantile spasm seizures. Infantile spasm seizures consist of a sudden jerk followed by stiffening. Infantile spasm seizures last only a second or two and usually occur close together in a series. Troy has some additional challenges. Troy has neurological visual impairment and has feeding issues. Some children with cerebral palsy also have challenges with swallowing, because of weakened muscles in the mouth and throat. Troy has a weakened ability to suck swallow.
After delivery, Troy stayed in a Neonatal Intensive Care Unit (NICU) for 51 days. Once home, and overtime his parents, Tatiana and Jason, realized they could not continue to rely on carrying him from place to place, since Troy was medically fragile. Thankfully, an occupational therapist suggested they contact Children’s Specialized Hospital’s Rehabilitation Technology department in Mountainside to learn about options for custom wheelchair, stander, and bath chair.
Troy’s mother, Tatiana Jarell said, “Linda Mulcahy (seating and positioning specialist at Children’s Specialized Hospital) was amazing to work with and took her time to fully explain the options we had for Troy’s equipment.”
Impressed with their experience at Children’s Specialized Hospital’s rehabilitation technology department; Troy’s family consulted with Children’s Specialized Hospital’s pediatric physiatrist Dr. Martin Diamond. The exam and diagnosis confirmed what the Jerrell’s already suspected: Troy has cerebral palsy.
Even though a diagnosis of cerebral palsy was a “hard hit” for the Jarrell family, Tatiana and knew coming to Children’s Specialized Hospital was the right step. Today, Tatiana can say, “I know that being a part of Children's Specialized Hospital Family Troy will never miss a beat. The doctors and therapists we have worked with help us stay a step ahead of the game… No one has ever told us that Troy "can't" or "won't…”
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Dr. Diamond also said, “The biggest misconception about CP is that there is also cognitive impairment as part of the diagnosis. While the severe forms may also have other abnormalities such as seizures, poor feeding, and cognitive delays, there may be only the physical impairment.”
Currently, Troy visits over a dozen specialists including: a pediatrician, a neurologist, a registered dietician, a pediatric physiatrist, feeding and swallowing pediatrician, developmental and behavioral pediatrician, occupational therapist, vision therapist, speech therapist, pediatric gastroenterologist, and an aqua therapist.
Troy has also received Botox injections from Children’s Specialized Hospital.
“Doctors use injections of not only Botox, into the muscles, but also alcohol around the nerves to, block the abnormal signals travelling from the brain from getting to the muscles,” explains Dr. Diamond. “Botox does this at the nerve or muscle junction (NMJ) while alcohol does this at the nerve fibers themselves.”
Dr. Diamond also explained how Botox can prevent surgeries, or delays the need for surgery at such a young age. Doctors “buy time” in a younger child to get the most out of therapy early on and delay surgery until a more appropriate age. This is “usually 7 to 10 years old.” Botox enables the muscles to greater relax, and reduces the spasticity or tightness for children with cerebral palsy, possibly for several months. Botox also reduces muscle spasms.
Yet Dr. Diamond reminds patients that after Botox treatments, “children still have to learn to use the muscles opposite the ones doctors inject to function better.” Dr. Diamond recognizes, “That’s where the lack of control part of the CP definition can be more limiting than the spasticity part.”
Tatiana has noticed the difference since treatment, in her son. She said, “Dr. Diamond has kept us fully informed and we were comfortable going into the procedure. Troy’s spasticity has noticeable decreased and my son has a better range of motion.”
Troy’s family aspires to provide the best equipment and technology for their son to communicate, play, and function comfortably. Some specialized equipment used by Troy include: pediatric elbow immobilizers, leg immobilizers, a wheelchair fit to size, a bathing system, orthotics, a Supine Stander, and a Gait Trainer.
The Jarrell’s continue to support their son, through hard work and support of friends, family, and the community. The family recognizes, “it is very important for Troy to receive as much therapy and aid as possible, especially during these early years because children are more able to adapt and respond to therapy at an early age, and at such a crucial developmental stage.”
With a recent visit to a doctor, Tatiana stated, “We were happy to hear that the doctor feels we are doing everything within reach to help Troy progress.” He has truly come a long way. We know that this isn't a race or a marathon and what matters is that Troy makes his progress no matter how "slow" it may be, and that Troy doesn't regress.”
The Jarrell family is a prime example of loving parents, despite what emotions may come sometimes with raising a child with medical challenges. The Jarrell’s put full effort into caring for Troy. “At times we feel like we're not doing enough so when we hear this from our doctors it truly is comforting and reassuring.”
Despite facing cerebral palsy, Tatiana shared how Troy is much like any other child. She explains, “Troy loves the outdoors! Once he's in the fresh air he is much happier and relaxed. He also likes to listen to music and have someone dance around with him.”
Tatiana Jarrell elaborated on how having a child with special needs has changed her, for the better. Tatianna responds, “As a special needs parent I feel that I've come to appreciate the smaller things in life. Each milestone no matter how small is a huge feat for us, like when Troy laughed for the first time which wasn't until after his first birthday…. Our dreams and goals change to what is real for Troy and that is part of the process. I've learned the true meaning of multitasking and organization. But most importantly I found a fight in me that I never knew I had. When it comes to what Troy needs I will fight for every last therapy, piece of equipment or anything else he may need to help him succeed.”
If Tatiana had an opportunity to teach a parent who does not have a special needs child, she would say this, “Be patient with us. We don't always know how to ask for help. We don't like to feel like a burden on anyone so we rather at times try to figure things out on our own although we really want help. We want you to ask about our child and don't want it to be a "taboo" topic.”
For parents whose child has been newly diagnosed with a special need, there is hope. Tatianna Jarrell remembers the feeling of worry. One thing Tatiana would tell a new special needs parents is, “The future and unknown is very scary but you as a parent must strive to give your child every opportunity possible to get stronger and build their current skill set. Medicine and technology are evolving every day and years from now there may be something available to our child that isn’t here today. Do not lose yourself in the diagnosis. Enjoy every moment you have with your child, as time passes quickly.”
The Jarrell family calls their son, “a little fighter.” He certainly is one strong little boy.