A Mother's Blessing

Durrani Asyraaf Bin Kamaluddin, Age 7

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When what was supposed to be a standard foetal check-up took unusually long to complete and Mdm Nurseriwaty Binte Rahim (“Nurseriwaty”) was shuttled between four different sonographers’ rooms to be examined, she had a nagging feeling that something was up. Finally, the consultant sat her down at the foetal medicine department to talk and broke the news that the child she was carrying would have spina bifida. Mdm Nurseriwaty felt her world come crashing down. 

She had kept the pregnancy a secret up until then, because she felt that it had happened too soon after her first pregnancy and she was uncertain how others would react. When informed of the heartbreaking news, she felt all the more alone and helpless. The spina bifida in Mdm Nurseriwaty’s unborn baby appeared as a sac containing a section of the spinal cord and spinal nerves that protrudes out of an opening on the baby’s back. Week after week thereafter, Mdm Nurseriwaty, who then decided to keep the news to herself, would attend at reviews alone and pray hard that there would be no further growth in the size of the sac. 

Mdm Nurseriwaty was determined to carry her baby to as close to full term as possible. Her heart broke when baby Durrani Asyraaf Bin Kamaluddin (“Asyraaf”) had to be taken away for surgery right after delivery by caesarian section. She could not see Asyraaf until after his surgery, and only at the Neonatal Intensive Care Unit, but she knew she had to be strong for him.  

Asyraaf is now seven years old. Mdm Nurseriwaty’s eyes beamed with pride when Asyraaf named his mother and elder brother without hesitation when he was asked who his favourite person in the world is. Living a fairly active life, Asyraaf is turning out to be the miracle that Mdm Nurseriwaty had hoped for. Spina bifida is a condition that could cause disability in all four limbs, but Asyraaf is blessed in that he can count soccer, basketball, playing the guitar, dancing hip hop and arts and crafts as hobbies he enjoys. Asyraaf’s interest in soccer in particular has been recognised and affirmed by Club Rainbow Singapore (“CRS”), and he is recipient of CRS’s Talent Development Fund.  

Asyraaf tries to lead a life as close to normal as peers his age, but it is not without challenges for him and Mdm Nurseriwaty. As spina bifida has caused the nerves in his system to not recognise certain organs in his body, Asyraaf is on medications for his bladder and bowels, and he has to be put on  diapers. Asyraaf also has to have a catheter inserted and changed every 3 hours as part of the Clean Intermittent Catheterization procedure that he has to live with. As a result, Mdm Nurseriwaty makes repeated visits to the school he attends every weekday, to ensure that Asyraaf gets a change of diapers and catheter. She does this in addition to having to care for two other younger children, and having to manage a home-baking business she runs under the name of “Violet Frost”. Mdm Nurseriwaty recalls facing resistance from the school initially for her frequent visits, due to the little awareness people have over her son’s condition. Thankfully, the problems have now been resolved with hard work and patience on Mdm Nurseriwaty’s part.  

Mdm Nurseriwaty and Asyraaf have also found much help from CRS over the years, ranging from solutions for her practical needs to socioemotional support. The family has received financial assistance from CRS and regularly receives food rations, milk and diapers from CRS. Asyraaf has also attended the various events which CRS organises for its beneficiaries, such as excursions to the zoo, safari, and an indoor playground. There has also been programmes availed to Asyraaf such as anger management classes, drama workshops and art jamming sessions. Through these various events, Asyraaf and Mdm Nurseriwaty have had the opportunity to meet other children with chronic conditions and their caregivers too. The continuity of volunteer support for events like Kris Kringle and Camp Rainbow also ensure that caregivers like Mdm Nurseriwaty can get much-needed time off caregiving, a welcome break for many who shoulder the caregiving responsibilities alone, day in and day out. 

Asyraaf and his family had been given the chance to go on a yearly cruise retreat organized by CRS. This is one of CRS’s most popular events as many of the CRS’s beneficiaries can never get a chance to travel overseas otherwise. The cruise retreat is organised in a manner such that the medical needs of the beneficiaries will all been taken care of. Financial difficulties with the costs of travelling are also eased as the beneficiaries of CRS receive full subsidy. As a result, being given the opportunity to go for this cruise retreat has been a dream come true for Asyraaf.  

In order to extend the opportunity to travel to every beneficiary and their families, CRS offers subsidised rates for every family so that the entire family can have the opportunity to go on a family vacation together. Needless to say, Mdm Nurseriwaty is very excited to go for the cruise retreat with her son herself. Mdm Nurseriwaty organized a fundraising bake sale specifically for raising the remaining funds that are required. Her children were so excited that they had on their own initiative offered to help her with baking more goods in hope that sufficient funds may be raised.  

Such positivity in making good of every situation thrown her way is indeed the hallmark of Mdm Nurseriwaty. Gone are the days of tears and heartbreak. Today, she is able to say confidently that Asyraaf is a blessing to her and she has been made a better version of herself through having Asyraaf in her life.   

Heart defect, No obstacle

Muhammad Azri Firdaus Bin Nor Azlan, Age 11

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As with most boys his age, young Azri is curious and slightly restless. He asks a photographer if he could play with the photographer’s DSLR for a bit, and then proceeds to walk about with the camera, taking pictures of things from a child’s unique perspective. He fidgets around in his chair, and wanders in and out of the room.  

Unlike most of them, however, Azri was born with a congenital heart defect known as Tetralogy of Fallot. The condition is characterized by a hole in the ventricular septum and structural abnormalities of the aorta, pulmonary valves and muscular walls. This causes low oxygen levels in the blood, which may cause those affected to appear blue and short of breath.  

It is usually treated with surgery. 

His mother, Mdm Ashikin, said those early days were difficult. “When he was born, he did not look right. The doctors immediately took him away to run tests and he was then warded for a month in the NICU. At 6 months old, he had to have [an] open-heart surgery to insert a tube into his heart so that it could pump blood properly. He was hospitalized for almost 3 months, and I travelled back and forth from home to the hospital every day, just to be with him.” 

Azri had a second operation when he was two years old to replace the tube in his heart, to accommodate his growing body. His condition causes him to fall ill easily, and he has to be constantly mindful of his movements so as not to dislodge the tube. Still, it has not stopped him from being physically active. 

“I enjoy playing with my friends and I like PE lessons,” says the 11-year-old, who is currently a Primary 5 student at Grace Orchard Special School. Soon after attending Primary 2 in a mainstream primary school, Azri was diagnosed as having learning and developmental delays. He was not able to cope with the mainstream primary school curriculum and it was then he was transferred to Grace Orchard at the age of 8.  Azri has since showed great improvement after changing schools and attending catch-up lessons.  

Smiling, he mentioned, “My teacher says I am good at Maths!”  

For his efforts, he received Club Rainbow’s Education Award, which is given to students who have shown good progress in their studies.  

Club Rainbow is also supporting the family in other important ways such as providing monthly food rations, yearly bursary, weekly tuitions, and previously with financial assistance. 

Mdm Ashikin is afflicted with diabetes, hypertension and kidney problems. The various ailments have led to complications; Mdm Ashikin recently had to undergo a toe amputation due to an infection, and she has to constantly go for medical check-ups to manage her various conditions. In addition, Azri’s condition requires him to go for regular follow-ups with a heart specialist.  

This has caused the family to rack up substantial medical bills over time, even though they are receiving subsidized treatment. 

As Mdm Ashikin is a Long-Term Visit Pass holder, she cannot seek employment in Singapore. Azri’s father, who is a cleaner, is the sole breadwinner for the family of 4. His monthly income is barely enough to support himself, his wife, and two actively-growing boys. Club Rainbow stepped in to help, by providing food rations, bursaries, tuition, and financial assistance where needed.  

One of the most important support from Club Rainbow has to be the social integration programmes. 

Mdm Ashikin recalls, “Azri used to be very quiet when he was young. He would not talk to people at all. But when he started to join Club Rainbow activities, such as Camp Rainbow, he slowly learnt how to talk to other people and make friends. He has a lot of friends now!”  

Joining Club Rainbow’s activities with Azri has enabled her to build up a support network, by providing opportunities to connect with other parents with chronically-ill children, social workers, and volunteers. It also helped her witness Azri’s growth in self-confidence, giving her some reassurance about his future.  

Like all parents, Mdm Ashikin has hopes and dreams for her child. 

“I wish that my health will get better so that I can continue taking care [of my children]. But my husband and I will grow old one day, so I hope that Azri will be independent and know how to take care of himself. I also hope that he will be happy and grow up to do good for others, where he can.” Mother and son then share playful banter as Azri replies, “I want to be a policeman next time!” 

When asked if she would like to share some final thoughts before the interview ends, Mdm Ashikin replied, “Every child is special and a blessing from God. Parents of kids with special needs, stay strong and hang in there!” 

The Strength To Stand

Eriyndatee Binte Mohd Rizal, Age 10

Mohammed Eriyandee Bin Mohd Rizal, Age 17

Mohammed Eriyndanee Bin Mohd Rizal, Age 15

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Laughing, Iszanah throws a pillow at her eldest son, Eriyandee, 17. 

“Ok, so you think you can stand now? I give you five seconds,” she challenges him.  “1, 2, 3, 4, 5.” He fails. 

“Again,” he demands. This time round he grabs the fridge door and hauls himself up into a standing position within five seconds.  

Eriyandee together with his brother, Eriyndanee, 15 and sister Eriyndatee, 10, suffer from Noonan Syndrome. Webbed body features, tender achilles and skeletal malformations make simple movements such as squatting on two flat feet or standing up from a sitting position a challenge. 

But to Eriyandee, he declares that he has no disability. “It’s not about about the body, it is about the mind. If you think you are weak, then you are weak.”  

And that is exactly what Iszanah wants her children to believe in. “You must encourage them to be as normal as possible. Too protective is no good, but you can’t not protect them either. You must balance. I really want them to stand on their own feet.” 

Her three children also suffer from asthma, smaller red blood cells, hole in their heart and inborn errors of metabolism. A typical 10-minute walk from home to the bus stop can result in tears and fever. Dealing with daily fever episodes, frequent pneumonia and monthly hospitalisation is routine for Iszanah, but she describes her life as a ‘lively journey.” 

“You cannot have the feeling like it’s a burden. Sometimes, we go up, we are happy. Certain times we go down, we are sad. Sometimes in the middle. I enjoy my life. I can fight with them, I can quarrel with them, I can laugh with them, I can cry with them.’ 

But her optimism belies very real financial troubles. She had quit her job to take care of her children and without financial assistance, Eriyndanee alone can chalk up monthly hospitalisation fees of $3000 - $5000. Her husband brings home $1600 a month and even though she takes on a part-time job, it is still insufficient.  

Financial support from schools, the hospital and organisations such as Club Rainbow has become essential. Apart from monthly bursaries, Club Rainbow provides monthly food rations of rice, milk, oil, salt, sugar, milo, tea, pampers, cereal and biscuits, which helps to cushion her monthly expenses. 

Janeth, a social worker from Club Rainbow, has also been an emotional crutch for her.  

“She’s the best. She understands me well. I also have my own family problems with my siblings and my parents. And even now I still don’t have a proper job, she still supports me from behind and tells me to try again. If my children are in hospital, she will also come to visit. She never fails.” 

For the children, social integration in school is a constant struggle. Unlike usual teenagers, the three siblings are short, skinny and weigh around 13-21kg.  

Eriyndanee shares that his schoolmates would flick at his webbed neck, making him dizzy, and call him names such as ‘Alien’. When they were in Primary school, him and his brother had stayed away from school for three months to avoid these hurtful comments. 

But since joining Club Rainbow three years ago, Eriyndanee says he has learnt to be grateful. “Before I go to the camp, I feel like people only need to look after me because I am handicapped. But when I got to the camp I really learn that there are more people who are in need of help other than me.”  

“Always think that you are lucky to have parents who love you. You can still walk, you can still eat, you can still laugh. Why should you be sad?” With this new mindset, Eriyndanee now stands up to his schoolmates and no longer feels bothered by the name-calling.  

Iszanah refers to her children as ‘special kids’ and believes that behind their disability, they have something which normal kids do not have. 

Eriyndanee for example, dreams of being a singer when he grows up. Unexpectedly, it was his singing that helped his parents to get over their initial internal struggles post their children’s diagnosis. 

“Because of our children, I told myself I am a useless mother to give birth to these kind of kids. My husband also really could not accept that we have these kind of children.”  

It was only when Eriyndanee won a Kindergarten singing competition that things took a turning point.  

“He made us proud and that was when his father started to try to accept.” 

Eriyndanee had performed at the yearly Camp Rainbow and him and his siblings also participate regularly in activities organised by Club Rainbow. He is also a recipient of Talent Development Fund from Club Rainbow which enabled him to attend Cajon classes. 

Just as their mother had taught them to be, the children have grown up to be confident and independent. They exude a deep sense of pride when they speak of their performance at their respective workplaces now. 

Juggling a job at McDonald’s with his studies, Eriyandee reaches home around 11pm - 1am on working days. His dedication and stellar performance got him a promotion within three months to team leader and he hopes to become a manager by next year. With his first bonus, he bought phones for him and his brother. 

“So we no need to say, ‘Ma, we want new handphones’, we work for ourselves.” Following his elder brother’s example, Eriyndanee has also gotten a weekend job at Subway. 

The house is filled with laughter and the family is tight-knitted. 

“The bonding must be there and you cannot stop your love towards them. You must always love them,” says Iszanah. “They are my candy. They are my bubblegum. When I feel sad, I think of them, play with them, make jokes and then, I smile.”  

“If possible we want to encourage families out there with special children, to not feel down, to not feel very sad. I want to tell them, ‘If I can stand, why can’t you stand’.”