Living With Cerebral Palsy

By Amit Noor

Arianna Jamil is a cheerful, friendly 9-year-old with a spark in her deep brown eyes and curly jet-black hair, short and messy, complementing her olive skin. She walks toward her computer gingerly. Her gait is unbalanced as she smiles as a clip of her favorite cartoon, Dora the Explorer, plays on YouTube.

Arianna, the daughter of Bangladeshi immigrants, has cerebral palsy, an umbrella term, that incorporates a group of non-progressive and non-contagious motor conditions that cause physical disability in human development, mainly in the various areas of body movement.

She lives with her mother and extended family in a three-bedroom house in Woodside, Queens, and loves to play with her cousins when they visit every other weekend. But much of her day, outside of school, is spent in the house, with no friends or playmates, playing games on her computer and watching cartoons.

“I know that my daughter will never be like all the regular children. It took me years to accept that reality. She is still my little champion,” says Shaheen Jamil, 42. “She works much harder to achieve the little things that others can do easily. I will never give up on her.”

Jamil, a single mother, emigrated to the United States from Bangladesh in 2001. Her daughter was born the same year. Jamil does not speak English fluently and often struggles to communicate with Arianna’s teachers and doctors. Despite the challenges, she tries to provide her daughter with everything she needs to improve the quality of her life.

She had a difficult marriage and left her husband a year earlier to move in with her older sister, she says. Finding work has been challenging but some government aid and financial support from family members, along with a part-time job at a local pizzeria, have improved her situation slightly. She is optimistic despite the challenges ahead.

“It is difficult for me because I do not speak English well.” she says. “I used to work for a bank in Bangladesh but my experience and degree has little value here. I need the money so will work anywhere at the moment but hopefully things will improve with time and patience.”

Cerebral palsy is not classified as a disease but a condition caused by damage to one or more specific areas of the brain, usually occurring during fetal development but sometimes before, during or shortly after birth, or in infancy and early childhood.

The United Cerebral Palsy Research and Educational Foundation estimates that 1.5 million to 2 million children and adults have cerebral palsy in the United States and that 10,000 babies and infants are diagnosed with cerebral palsy annually.

There is currently no known cure but improving technological innovations and therapies can help improve muscle function and coordination in people with cerebral palsy. Physical therapy at home, during an early age, has been beneficial for increasing numbers of children with special needs.

“I worked with Arianna from age 1 to 3 for Early Intervention,” says Silvia Vaher, a physical therapist, who is working for the New York City public school system. “At that time she received physical, occupational and speech therapy. Early Intervention is a critical time to receive therapy. This is the time when the brain is the most malleable.”

Vaher, 47, also works with children under the age of 3 as part of the Early Intervention program. Arianna “responded very well to the handling,” she says, and physical therapy helped “improve her strength, range of motion and lower extremity dissociation so she could be as independent as possible.”

“Arianna’s mother was also integral to the treatment as she followed through with going to the doctor” and obtaining braces that she needed for her ankles. These braces were very important for her to wear as she needs them” to maintain her ankle range of motion. Increasing social awareness and enhancement of treatment options have made significant contributions in improving the quality of life for people with cerebral palsy. The recent addition of CA Technologies Rehabilitation Center at the Hospital of Special Surgery, on the Upper East Side, is one such example.

The 7,000-square-foot, high-tech center is designed to improve access to pediatric rehabilitation services for surgical patients and children who need outpatient therapy. The department is equipped with a physical therapy gym, therapy rooms for fine motor skills, rooms for speech and occupational therapy and quiet areas for children with sensory needs. Additionally, an equipment clinic focuses on wheelchair and mobility needs and a full collection of virtual reality toys and software to be used in therapy.

“The hospital has a lot of clinics, physicians and therapists who specialize in seeing patients with cerebral palsy,” says Magdalena Oledzka, 41, a physical therapist and the pediatric section manager of the CA Technologies Rehabilitation Department. “We have a motion analysis lab, where they are seen for their gait analysis, which helps the doctors to make decisions.”

Arianna has been fortunate to receive treatment from an early age. Therapists regularly came to her house to work on her motor skills and physical movement. She attends a school for children with special needs and regularly visits her doctors for treatment and medicine. She still has problems with her posture and her ability to speak clearly.

Jamil helps her daughter to brush her teeth and take a shower. They spend their nights doing homework and watching cartoons on a small, old television. She says she’s thankful that Arianna is improving and becoming more independent with each passing day.

“I am worried about her future,” Jamil says. “I have been since she was born, just like any other mother. I don’t know what life has in store for her. All I know is that I will always be there for her so that she can make the most of her life and create her own beautiful world.”

Speak Your Mind

css.php