From Challenging Phases to Facing Challenges

By Zoyeb, Ataxia with occulomotor apraxia, India, January 11, 2020

A little support can make one stand tall

From Challenging Phases To Facing Challenges

Story of Zoyeb 

from Chennai / India - ATAXIA

Written by his father – Iftikhar 

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Zoyeb , who is now 26 years old was a very active, jovial and a normal boy till he was about 15 or 16 years old.

He was good at sports and swimming. He had a good circle of friends and cousins and enjoyed the childhood.

When he was in his XI std, he started feeling some differences in his body and limb movements. He realized that his hands and legs were not coordinating like before , and there was a slight imbalance in his gait too. He had his apprehensions and fears , but he tried to hide this from everyone. It became apparent after sometime , when he started dropping things often and was walking in an imbalanced way. In 2010, after a few initial tests it was confirmed that he could probably be having Ataxia. The available tests for Ataxia were done but no confirmation was there , despite doing the tests and retests at various hospitals and lab in India.

When he was diagnosed , the doctors informed that Ataxia is a rare genetic disorder , degenerative and progressive , with no medications for cure or arrest for the progression.

This was at a time , when Zoyeb was in his XII std .... a high school finishing class. In India, this is considered as the first landmark for the students to clear which in turn decides the student’s education path for the major subjects to pursue in colleges.

And at this time , to be informed about a Rare Disorder, about its possible degenerative progression and also that there was no medication, did have a major toll on Zoyeb.

On one hand he had to put in his full attention to his education to clear his XII std exams , and on the other, there was a constant running around meeting doctors and visiting various hospitals.

In the initial stage , he even contemplated giving up his schooling. He withdrew completely , with no connection with anyone. He struggled for some time to come to terms with certain challenges which cropped up all of a sudden in his life. Luckily, it was a very short period of withdrawal. He decided that he will complete his schooling.

His School* Principal* and his Teachers played a very important role at this crucial stage. They gave him the needed support and kept him motivated to face the Exams. By the year could end , his walk was becoming staggering and his hand writing was slowing down. He needed support to walk around , and needed permission for an extra hour to complete his exams.

He cleared his exams , and got a confidence to go ahead with his education.

He took up Zoology as a Major for his Graduate course. He joined a College in Chennai to pursue his BSc in Zoology and advanced Bio Technology. He went on further to complete his MSc and M.Phil in Zoology , and added another degree via correspondence BSc Psychology.

The Management , The different Principals during this period , his current HOD* , and all his Professors played an important role during his Degree and Master’s course. They extend moral support and kept him motivated to complete his Courses.

When he finished his M.Sc , Zoyeb developed an interest in Teaching as a profession. He geared up to take an examination which qualifies one to take up Professorship. SET ( State Eligibility Test ) as the exam is called is needed to qualify in the State of Tamil Nadu ( Chennai is a City in the State of Tamil Nadu ). He cleared this exam in his first attempt. Luckily there was an opening coming up in the same college where was studying , and he applied for an Assistant Professor’s Post. The College* again was very supportive. They appointed him in 2017. Now, it is 2 years since he has been working as an Assistant Professor of Zoology.

His next step is he is signing up to start his PhD.

The period from the time of diagnosis till date – has been a challenging one for Zoyeb as well as for the family. After the initial period, walking without support became difficult. His hand writing slowed down and then became illegible. In fact in his MSc final semester, he had to use a Scribe for his exams.

Today, despite his physical challenges, he is very active and social. He takes part in all possible activities. He has a good circle of friends of cousins , who make sure he does not miss out any fun activities like Movies and Malls. He is a Gamer - on his Play Station, and is a confirmed Foodie.

When ever possible – he goes for swimming too.

Recently he went on the Ramp too – Fashion modelling.

He has plans for Scuba Diving ( assisted one for challenged persons ).

Zoyeb and his Dad became Volunteers in Rare Diseases Segment and Inclusivity Segment. They both volunteer to spread awareness about Rare Diseases and Disorders, and also on the need for Inclusivity of challenged persons in the main streams.

Zoyeb was one of the Host and Speaker at The India Inclusion Summit in Nov 2018 at Bangalore.

He speaks at occasions to motivate persons facing challenges.

Ataxia tests finally narrowed down to Ataxia with Occulomotor Apraxia.

On the Medical front – he is currently searching for any research going on this Gene mutation.

On Education / Career front - he is starting his PhD this year

On the Social front – he plans to get more active in both segments – Rare Diseases and Inclusivity.

He is very keen on motivating students – especially those facing challenges similar like his.

From a total standstill to moving forward , to face challenges , and to set up major Goals for Education , Career and Social presence – has been a difficult journey.

All thanks to God, this journey has been made possible.

Our Sincere Thanks to

* Asan Memorial Senior Secondary School – Chennai

* The Principal of the School

* The New College – Chennai

* Dr. Asrar  – HOD of The Zoology Department – The New College.

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