Zoyeb's story of living with Spinocerebellar Ataxia

“Determination has no disability”

- Robert M. Hensel

Spinocerebellar ataxia refers to a group of hereditary ataxias that cause degenerative changes in the part of the brain related to the movement control (cerebellum) and sometimes in the spinal cord. There are many different types of SCA and they are grouped according to the genotype of the mutated gene. People with ataxia have problems with movement, balance, walking, gait, coordination issues and sometimes slurred speech and vision problems. Treatment is mainly supportive aimed at addressing the symptoms. People with ataxia can lead a fairly normal life if as a society we support them. Communities must rally around to ensure accessibility and inclusion for all people with disabilities. As a collective group we must be able to see people’s abilities and enable the best in them by providing support services.

OPFORD’s objective is to capture the lived experiences of people with rare disorders. We encourage parents, siblings, family members and friends to narrate their experiences of living with someone with a rare disease. Family support is the mainstay for someone with a rare disorder and this inspiring story captures the unfailing support of a father for his son affected with Spinocerebellar ataxia. The narrative brings to light how families rally around and uplift a member with a rare disease. What is also positive in this story is the strong community support from educational institutions and educators. Zoyeb is an excellent example for other people with Ataxia or any other rare disease. He shows us the way forward with optimism and positivity. The best takeaway message here is “Nothing is Impossible. Believe it is possible. Believe in yourself.”

Zoyeb Md Zia is affected with a rare neurological disorder SCA - spinocerebellar ataxia. He is 24 years old now and this issue became visible when he was in high school - (XI std in India). This genetic disorder affects the coordination of the limbs, gait movement, and slurs the speech. This is a progressive disorder with no cure or medicine to slow down or reverse the degeneration.

Zoyeb’s SCA type was not diagnosed as not all tests were available in India. Since there is no research going on in India on Ataxia, there has been no progress as far as medication or testing is concerned.

Zoyeb was a normal child and was studying in a regular school. With the onset of the disease, he was at first hesitant to continue his schooling. But he overcame the initial issues and continued in the same school. The school was very helpful and gave him immense support - which helped him finish his schooling. He did his BSc, MSc and MPhil in Zoology. He also completed a correspondence BSc in Psychology. He cleared a competitive State Level Eligibility Test - for qualifying as a Professor. The College where he studied was very supportive. They encouraged him and motivated him and since he was qualified, they have given him an opportunity to perform as well.

He is currently working as an Assistant Professor of Zoology in the same college where he studied.

Studying in a regular school and college, being assisted to his classrooms, no inclusive settings were and still are many challenges he faced and faces. With a degenerative disorder – things were getting more difficult with the passage of time. His balance was getting worse, and his writing was affected to a great extent. In the beginning he could write very slowly, and needed extra time to write his exams. After some time his handwriting become ineligible.

Visits to various hospitals and doctors were not getting any results. He concentrated more on his education and career instead. His determination has kept him moving ahead. He faced many physical as well psychological barriers like many other challenged students. Being an invisible disorder, an unknown and undiagnosed disorder, he was at times disillusioned if people might wonder if he was faking the entire thing.

To get a PWD (person with disability) medical certificate, to get extra time from board to write the exams, and to get a scribe sanctioned by the board to appear for the exams were all uphill tasks which he had to go through. These procedures put more and more stress on the otherwise already burdened people. When there is no inclusive setting at schools, colleges or offices; everything depends on favours and help.

He moved ahead positively and faced the stares, the sympathetic faces and his physical disorder. By God's Grace, he received strong support from his school, his college and colleagues and friends. He was mentored well, motivated and encouraged to pursue his education and perform well.

Since he cannot walk without support or use assistive devices, somebody has to hold him and take him around. He plans to start his PhD - the area of research and where to pursue has not been decided. He plans to study genetics, genomics or bioinformatics. Since he is working full time now, he would need a proper career and academic counselling before he starts his PhD.

Initially he was desirous of doing his PhD in a state/country where research is on for Ataxia, so that he could continue his education and at the same time be enrolled in research. He hopes to put his Psychology course to practice counselling and also wishes to become a motivational speaker. The right setting and a good mentor could propel him to perform well in this field too. The personal experience he has gained, if shared, could help somebody else who is facing challenges in their life.

He is a very friendly person, full of humor and laughter. A gamer (play stations), foodie and football fan. Thanks to his friends and his cousins he goes regularly for movies, football matches and attends all functions. The support he has received from family, friends and communities has ensured that Zoyeb never misses out the fun in life.

Story by Zoyeb’s father - Iftikhar Md Zia

Dear OPFORDians,

Zoyeb is keen to become a motivational speaker and share his experiences of life. We think he will be a strong motivation and inspiration for all given his speaking abilities. OPFORD would like to connect him with a supportive mentor who can encourage him in the right direction. Please do write to us on namitha@strandlf.org if you or anyone else is willing to mentor Zoyeb, and / or would like to connect with him.