– School Guidance and Counselling Officer talks life with Stargardt Disease

IMAGINE developing a vision disability to the point you cannot read the time on a clock, or see the numbers on a door. How about being told that the situation is hopeless, and that there’s no cure? This is exactly what 16-year-old Anjalie Sookra, now 22, had to deal with when she was diagnosed with Stargardt disease, a rare genetic eye disease that occurs when fatty material builds up on the macula – the small part of the retina needed for sharp, central vision. It was the end of the world for her at the time, but definitely not now.

Growing up in Tain, Corentyne, Berbice, where she still resides with her caring, supportive family, Anjalie’s mom would teach her to read the time on the wall clock, but found that she couldn’t see the numbers. Failing to assume the worst, no concrete steps were taken to check on the situation until she was about 16 when her family took her overseas.

Anjalie still remembers the day she heard of the diagnosis. “My mom started to cry, and I started to cry. That was the weakest point of my life,” Anjalie reflected in an interview with Pepperpot Magazine. “When you’re a teen, you want to drive and start dating.”
It was no question in Anjalie’s mind that it was the end of the world for her; at the time, it was as if there was no point in coming back and planning to continue her studies. “I came back home thinking I would eventually drop out of school [Berbice High].”

Persons, including her teachers, would think that she was making excuses not to get her work done, but it wasn’t until one teacher realised one day that Anjalie was not faking her condition. She called Ganesh Singh from the Guyana Council of Organisations for Persons with Disabilities for assistance, and Ganesh kindly stepped in and provided just the help she needed. She could write her exams in a different building, with someone reading and writing for her.

Anjalie was a top student in her National Grade Four Assessment, earning herself a place at the prestigious President’s College. Though at times she faced discrimination and obstacles related to her disability, she persevered, graduating high school with numerous top honours and an invitation to the National Award Ceremony in 2018, recognising her outstanding academic achievements.

ANOTHER STONEWALL

Fueled by her family’s unwavering support and that of Rights Activist Ganesh Singh’s support, Anjalie found within her an unbreakable will to excel academically and uplift her community.
“Ganesh said I could do it, and he signed me up for a scholarship; it was approved in no time, and I started university. But this was another stonewall for me because I was this insecure, low-confidence young woman starting a big university with confident, educated people.”

Anjalie would often cry because, again, her lecturer didn’t believe that she was visually impaired and thought she was making excuses. “On the [classroom] doors, there were numbers, and I couldn’t see the numbers and didn’t have any friends,” she recalled.
She couldn’t read the materials provided and everyone just kept promising to help when she’d raise her concerns. “The first two years were hell,” she expressed. Thankfully, Ganesh again stepped in and wrote to the university, which resulted in some improvements. And then COVID-19 came, and everything went online, which worked out easier for her.

IT ALL PAID OFF
Despite setbacks, Anjalie’s journey of continuous learning and determination continued with a Bachelor’s Degree in Social Work from the University of Guyana. Over four years of dedicated study, the programme moulded her into the empowered, resilient woman she is today.
Currently, Anjalie leverages her skills and passion in service of others as a school guidance and counselling officer with the Ministry of Education.

She works with students from the Port Mourant Primary and Secondary schools. “We counsel students, motivate them, empower them, guide them academically, mentally, spiritually; we work along with teachers to have better relationships with children,” she explained.
She also actively contributes to organisations like the International Foundation for Electoral Systems (IFES) Guyana, GCOPD, and artistic/athletic groups, pursuing hobbies like music, visual arts, running, and bodybuilding.

However, above all Anjalie’s greatest passion lies in understanding human behaviours and helping uplift others facing challenges. This pursuit led her to enroll in a Master’s programme in Psychology at the University of Southern Caribbean Trinidad and Tobago.
Anjalie was also humbled to shadow British High Commissioner, Jane Miller and serve as an election observer during Guyana’s recent Local Government elections. These unique experiences only deepen her desire to enhance inclusivity and accessibility for all of Guyana’s citizens.