Cheyanne Kelly Lobo (right) with her mum.
Cheyanne Kelly Lobo (right) with her mum. Image Credit: Supplied

Hear 19-year-old Cheyanne Kelly Lobo belting out ‘The Climb’, a cover of the Miley Cyrus song, and the only thing you’ll notice are the goosebumps on your arms as she hits those high notes.

The psychology student was at the Expo 2020 Dubai’s Opportunity Pavilion this Friday as part of a concert by Rising Stars, a group of People of Determination, to showcase her talent and to raise awareness about her congenital eye condition, Stargardt disease. This condition disrupts a person’s vision, causing blurring of fine details, unbalanced spatial acuity and trouble with colour impression.

What is Stargardt disease?
This inherited condition is caused by a recessive gene (the ABCA4) that causes fatty build-up called lipofuscin around the macular, which is at the centre of the retina. Dr Dheeraj Kewlani , Specialist Ophthalmologist, Retina and Cataract Surgeon, Aster Jubilee Medical Center, explains that the macula is the part of the retina responsible for the central vision and allows us to see fine and small details clearly. The macula is much more sensitive to detail than the rest of the retina (peripheral retina, allows lateral vision) and, therefore, if it is affected, the quality of vision is reduced. When the macula is affected, the central vision is lost and causes unfocused vision and lack of sharpness.
This syndrome is one of the conditions under the umbrella of juvenile macular degeneration. Dr Abhijeet Trivedi, Specialist - Paediatrics and Neonotology, Aster Hospital, adds that the disease is rare and found in 1 out of 10,000 individuals. There are three types of Juvenile Macular Degeneration: Stargardt disease; Best disease; Juvenile retinoschisis.

The India-born Portuguese expat has lived in Dubai her entire life, and it was her schoolwork – or rather, the lack of it – that led to her diagnosis. “In class, in grade 3, I used to have incomplete work and used to talk a lot in class, and then my teachers used to complain to my parents. They thought it was because I was a mischievous child and then one day when my parents asked me and I said, ‘Oh, I can’t see the board’.”

Thinking she needed glasses, the Lobo family headed to the doctors. “It was very difficult for them to find a power for me to be able to see and then I actually wore glasses for two weeks, but I still could not see fine details,” she recalls.

And so when the family were on a vacation in India, they went to get more tests done. That’s when the doctors told her: You have the progressive Stargardt disease. The symptoms of Juvenile Macular Degeneration can appear during childhood and/or adolescence and can affect one or both eyes. In some cases, patients can maintain useful vision for decades (Best’s disease) and, in other cases, vision can be lost to legal blindness early in life (Stargardt’s disease), explains Dr Kewlani.

How does one diagnose Stargardt disease?
The American Academy of Ophthalmology explains that in order to really see what’s going on, doctors must first dilate the pupil. “People with Stargardt disease have yellowish flecks called lipofuscin in and under the macula. Sometimes these flecks extend outward in a ring. Lipofuscin are fat deposits from normal cell activity. These deposits build up more in people with Stargardt disease than in other people,” it says.
The site adds: “A test called fluorescein angiography may be used. In this test, a dye is injected into your arm. The dye is photographed as it circulates through the retina’s blood vessels. In people with Stargardt disease, the photos show a dark area within tissue of the retina. This helps the ophthalmologist diagnose Stargardt disease.” Of late, genetic testing has also been made available.

Tools to manage the condition

“We were completely clueless, but the doctors in India were supportive, they explained what it was, they gave me a couple of tools to help me and helped me practice with the tools,” Cheyanne explains.

The telescope (left) and the magnifying tablet - these are the tools that helped Cheyanne in school.

These aids were a telescope, which she use to decipher what was written on the board, and a magnifying glass to help her with what had hereto been illegible words in books. She was also given a special pair of glasses to help her with watching television.

Unfortunately, explains Dr Trivedi, there is no cure for Stargardt disease. “There are certain visual aids, adaptive training and other tools that can help young people with vision loss remain active. These are:

  • Light deprivation
  • Wearing sunglasses in UV light to protect eyes
  • Visual aids and mobility training to adjust vision loss
  • Gene therapy is under trial

Return to class

The problems began almost instantly – she recalls the first day picked up the telescope and put it to her right eye. “I remember I was using it and the teacher complained to my parents in a note, saying, 'Cheyanne is using this sharpener in class' and I showed it to my parents and they spoke to her. Of course she apologised, but it took a lot of getting used to from the teachers and from peers.”

But other than a brief stint where she was bullied, she says, she didn’t experience any hostility from her friends or classmates – they were quite accommodating.

She recalls, for instance, that because of all the steps required for her to just jot down notes – i.e. pick up telescope, put to eye, read, put it down, then write and repeat – she began to ask her bench mates to read out the words on the board aloud, which they did without fail. (In later classes, the teacher would tell her to pay attention in class and borrow and write notes at home instead of during the lesson.)

Cheyanne with her family
Cheyanne (second from left) with her family Image Credit: Supplied

To come to terms with certain things took time. For instance, one fallout of her condition is the inability to see fine details and faces. “So when it comes to making friends, I get very very self-conscious sometimes about the fact that I can’t look at people straight in the eye, because since I was diagnosed… if I was talking to someone, they would look back and say, ‘Who are you talking to?’ I understand that it’s not their fault but at the same time … I used to be very very shy in terms of making friends just because I didn’t want to deal with the question. But now, as I get older, I realise people don’t really care as much,” she says.

It was a gradual acceptance that happened thanks to her mum. Once, she explains, she tried to navigate a space without help, but was so frustrated at the end of it that when she got home, she burst into a tirade. “Why,” she asked her mum, “Why do I have this condition?” Years later, she remembers the words: “She said a lot of people may be asking this question about their own lives but just see how you are handling it so much better than other people probably would, you have so much support – it’ll be fine. She’d always support me whenever I was down.”

Recent loss

Maria Frida Lobo was 48 years old when she passed away a month-and-a-half ago. She had fought breast cancer for 10 years before succumbing to it. But, looking at her, says Cheyanne, you wouldn’t know she’d been ill. “One thing she definitely taught me was to stay strong, because you know she stayed strong for those 10 years. She was always positive. She never spoke about having breast cancer in a negative way – she never said, ‘Oh why me?’; she always had a positive outlook,” she explains.

“No matter how down I feel, I always think mum managed to always stay so positive, mum was an inspiration, you can also be an inspiration to so many people,” she adds.

No matter how down I feel, I always think mum managed to always stay so positive, mum was an inspiration, you can also be an inspiration to so many people

- Cheyanne Kelly Lobo

She laughs at a fond memory. “One day we were watching a play and heard the dialogue ‘You are my hero’ and so I went to my mum and said, ‘You are my hero’ and she said, ‘You are my hero’, so I know that in a way, we inspired each other.”

But she admits, in a quiet tone, that currently thinking of her mum as gone forever is an abstract concept. “If I’m being very honest – it hasn’t really hit me completely yet. I haven’t yet felt sad about the whole thing yet, maybe it’ll hit me in a couple of weeks or months, but I also spoke to my friends who have also lost a parent and they told me it didn’t hit them either for some time,” she says.

Rahima Amiraly, Founder, Rising Stars

For now, she’s keeping very very busy – thanks to her group of family and friends. Even her performance on Friday was a result of a friend’s parent’s push. “She actually found out about the Rising Stars, messaged dad and then asked me if I wanted to do it. She’s always encouraged my singing, and she’s wanted me to make my eye condition known and to talk about it,” she explains. And so she did.

Ahead of her solo, Cheyanne wrote her own introduction and it said simply: “My mum used to say, ‘If life shows you that you’ve got 100 reasons to cry, you should show it you’ve got a 1,000 reasons to smile.”

What is the Rising Stars group?
Dubai-based talent academy Rising Stars, for People of Determination, has helped children grow in confidence and make friends ever since it was launched in December 2020. Rahima Amiraly, Founder and teacher, explained that the academy has been her dream for 15 years. It was inspired by a series of fortunate events. “I once saw a girl having a bit of a breakdown and she was crying a lot, and I asked her mum and she said, ‘Yeah, she’s fine’. She was in my community centre and so next minute her daughter turns around and pulls my hair – I had hair extensions at the time and they came off in her hand. They asked if I was okay but no one checked on her. And I wondered why they didn’t check on her. Since that day, I took her hand and became friends with her. And I told her mum, I’m really interested in helping your daughter and you, she’s only two years younger than me and she cried – she’d been waiting for so long for someone to come along and be her friend. And since then her mum said, you’ve got a gift, you should work with kids with special needs.”
This incident coincided with Amiraly observing on a school compound that some kids were just excluded from activities. “I myself have been bullied and it’s not a good feeling, so I would want to one day make something inclusive,” she said.
The resulting academy – where music and dance come together and foster friendships – has seen transformations. “The children’s confidence – them becoming friends, them talking more, it makes a big difference to a family if their child is not so verbal. Little transformations are massive for our families,” she adds.

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