Finding Light In Darkness

Nur Hazirah , Graduate Beneficiary, Age 21


The poet Victor Hugo once said, "What makes night within us may leave stars”, a lovely quote  about finding the light in darkness. The quote also aptly describes 21-years-old Nur Hazirah’s life, and how she found her light in spite of it all. 

From a young age, Hazirah was aware that her life would not be ordinary. She recalls an early memory of needing to consume many pills and getting frequent jabs, which are things that most children do not have to go through. Her parents did not tell her at first about the reasons behind the many medical treatments she had to undergo, only that she had to do it. 

Hazirah was born with thalassemia major and HbH disease. Persons with thalassemia may produce less haemoglobin (a red protein which transports oxygen) and have fewer red blood cells in their body than normal. As a result, they suffer from anaemia, which causes symptoms like fatigue, weakness and slowed growth. 

For Hazirah, her treatment regimen consists of an 8-hour infusion of medicine, followed by two pills in the morning. This has caused some restrictions on the experiences she could enjoy while growing up. The condition also makes Hazirah prone to falling ill. She recalls missing 3 or 4 days of school every month, which led to her studies being affected. 

“I wanted to feel what others felt. My cousins, who I am close to, could stay out late at night, but I couldn’t because I had to go home for my medication… I also couldn’t join my classmates for PE, and the school had to make special arrangements for me for my medical treatments.” 

“Because I was different from others, I was bullied by my classmates. I felt left out.” 

The bullying started in primary school, at a critical age when children are starting to be aware of their individual differences; it did not get any better even when she progressed to secondary school. It was only after years of torment that she found the courage to confront her bullies, while in upper secondary. She felt depressed and lost. 

At some time, while still in primary school, Hazirah and her family joined Club Rainbow, upon the suggestion of a family friend. 

“Good thing I joined Club Rainbow, I received a lot of support there,” says Hazirah. Club Rainbow’s tuition sessions helped her to catch up with her schoolwork, and Camp Rainbow allowed her to meet new friends. Importantly, she also got to know Sylvia, who was Club Rainbow’s social worker assigned to her, and who supported her emotionally through the difficult adolescent years.

Sylvia recalls, “Hazirah was very reserved in secondary school and didn’t want to share her problems with me at first but opened up more with time.” 

Through those dark times Hazirah persisted on, and finally had the light come into her life when she graduated from secondary school. Unlike her classmates in secondary school, her coursemates in ITE were friendly and supportive of her despite her condition. She graduated from ITE in mid-2018. 

“In ITE, I felt like I could finally breathe,” she says. 

More challenges lay ahead. Tragedy struck when she lost a dear friend that she met at Camp Rainbow; this friend helped to draw the shy Hazirah out of her shell and made efforts to make her feel included in activities. The two were close, and Hazirah felt grieved when he passed. But unlike the past, where she would keep her emotions and feelings to herself, she understood that she could rely on others for help and found the strength to reach out to Sylvia. 

On what keeps her going on, Hazirah said, “Push away the negativity and think positive thoughts. Just do your best and think about your future.” 

Inspired by her mother, who is a special education teacher, Hazirah plans to go into the childcare and early education sector. She enjoys being around children and, as such, has actively volunteered at Camp Rainbow for the past 4 years. This has allowed her to meet, befriend, and support other young beneficiaries with similar conditions. 

“She is very resourceful, eager to find ways to help herself, and very proactive,” said Sylvia. 

The drive to improve herself is evident. Hazirah, who is interested in photography, tapped on Club Rainbow’s Talent Development Fund to take part in related workshops, and in return, has helped to take photographs during Camp Rainbow. To beef up her portfolio, she helps her friends with their photography projects, and is considering becoming a freelance photographer. 

Sylvia, who was her social worker of 10 years and who walked this journey with her, is glad to have witnessed Hazirah’s breakthroughs. “The biggest growth [that] I see in Hazirah is [her] being able to cope better with her emotions. I am happy to see her becoming more resilient.” 

“I am very proud of her.”

Keen to help other children and youths like Hazirah? Click here to donate to Ride for Rainbows 2019, our annual night cycling event that aims to raise funds for children who have chronic illnesses and their families.

Written by: Jiayan
Photo credits: Josh Wijaya