Nicholas Heng, Age 13
Sage Tan, Age 13
Born maturely at 2.5kg on Christmas day, Sage was the ideal healthy baby that any parent could ask for. He might have drank too little and slept too much, but his parents did not think much of it. However, when Sage couldn’t wake up on the 10th day, Cindy did not need her mother’s intuition to know that something was wrong.
At two weeks old, little Sage was rushed into the Intensive Care Unit (ICU) and diagnosed with Maple Syrup Urine Disease (MSUD). It is a rare genetic metabolic disorder that prevents the body from processing certain amino acids which are formed when protein in food is digested. When the level of amino acids in the blood reaches a high level, it becomes toxic to the body. This can cause brain damage, seizures and, if left untreated, death.
The medical team finally identified the illness through the distinctive sweet-smelling urine where the disease got its name. The disease was so rare and almost unheard of in Singapore that it threw many doctors off and they did not know what to do.
Subsequent blood tests found that Sage’s blood was so toxic he needed to undergo dialysis. However, his 2-week old veins were so small that even the thinnest catheter could not be used. Thus, the doctors had to do the transfusion manually by stringing blood out and then pumping fresh blood into Sage’s body through his legs. This painstaking process took 4 hours.
Thereafter, the only thing Sage could consume was specially formulated milk modified specifically for children with MSUD. Unfortunately, back in 2006, Singapore had yet to produce such a formula and it had to be shipped in from the UK. At this point, Sage was in a coma in the ICU. To make matters worse, there was a complication with the information given to the UK medical staff and the fatal miscommunication caused the special milk formula to never reach Singapore’s shores.
Both parents were distressed but Cindy was guilt-stricken to know that the milk she had been providing her son for the first two weeks of his life was killing him as his body could not process the protein in the milk, and that Sage was now living off a drip in the ICU.
Before all could be lost, a call came from Sage’s aunt in KL bringing the first hopeful news: there was a similar modified milk formula in Hospital Kuala Lumpur. The doctors there, after hearing about Sage’s condition, were ready to ship a batch over. With the prompt help of Sage’s relatives in transporting the formula from KL to Singapore, Sage’s condition improved and he was discharged after spending a month in the hospital.
However, the worst of it was far from over for little Sage and his family.
After Sage was well enough to return home, Cindy took it upon herself to prepare Sage’s milk formula daily and care for him. The special formula contained 6 different ingredients whereby Cindy had to measure the exact dosage for each ingredient and note the batch limit for the day. Too much protein and Sage would be groggy; too little and he would be cranky and be unable to settle. Furthermore, the modified milk produced a rather fishy smell, causing an acid reflux where Sage would throw up 9-10 times daily. This was very stressful for Cindy as she had to make sure Sage met the daily quota of nutrients for his growing body, and each episode would upset the delicate balance of the nutrients he needs.
Cindy recalled once when she broke down and cried after Sage had thrown up all over the floor instead of into the plastic bowls that littered the house, making it impossible for her to measure how much protein her son had lost and how much milk she had to replenish. It might had sounded silly to others, but each episode had to be carefully quantified as it was a literal matter of life or death for her son.
In 2006, Singapore did not have a proper machine for blood testing for genetic conditions. Thus, the blood had to be flown or driven up to KL for processing where the results would then be sent back. Every 3 to 4 days, Sage would have to take a blood test to ensure that each component was within safe parameters. By the time Sage was 3, he had taken more than 150 blood tests.
Throughout his ordeal, Sage remained a happy child, easing his mother’s worry with his bright smiles and cheery personality. He was greatly entertained by toy cars and models and it was a common sight to see four-wheeler gifts of all shapes and sizes from relatives and friends decorating his hospital room.
Sage’s case of his rare genetic disease spread to his neighbors and community, and several articles covered his story. This reached Abbott Nutrition SG who pledged to sponsor 2 years' worth of the specially formulated milk for Sage, which costs $60 per can and lasts 2-3 days.
However, Sage’s condition went downhill days after his 2nd birthday in late 2007. He caught a stomach flu, which caused an influx of amino acids to accumulate due to the imbalance of nutrients in his body. He was then hospitalized due to multiple seizures where the doctors expressed their worry on the long-lasting effects on Sage’s brain if the seizures were to continue. They raised an option of a liver transplant, which would allow Sage’s body to process protein normally and finally give him a chance to live a normal life.
The family had a serious discussion about it, taking into consideration the many risks involved as there have been very little operations done on children with MSUD in the last 10 years. Eventually, Cindy made the tough decision to go through with the transplant.
Then, came the problem with finding a matching donor. As the donor cannot be a carrier of the defective recessive MSUD gene, neither Cindy nor her husband could be the donor since the disease was genetic. Everyone had to get tested. Sage’s Cousin (Cindy’s Nephew) was found to be a positive donor and at 3 and a half years old in April 2009, Sage went through his first liver transplant at NUH.
Unfortunately, complications arose during the operation, the hepatic artery was found to have a blockage and it caused a decrease in oxygenated-blood to flow into the organ. This also caused his bile ducts to clot and gradually, he developed jaundice.
In the wake of a failing liver, Sage was placed on the priority list for another transplant from a cadaveric donor. After 4 months with no matches and the toddler’s health steadily deteriorating, Sage’s aunt volunteered for the transplant despite the risks to both the recipient and the donor. Within 6 months of his first transplant, Sage went through his second transplant in October 2009. This time, a doctor who was an expert in the field was flown down from Japan to Singapore to carry out the operation on Sage.
To the relief of his parents and relatives, Sage’s second transplant was a success.
Today, exactly a decade after his successful transplant, Sage is a happy-go-lucky child with smiles for everyone. Although the many operations he went through left him with deep physical scars and noticeable knots and bumps from the non-dissolvable sutures, his optimistic and bright nature has held strong.
His early tumultuous years and late medical detection caused Sage to suffer from global development delays and language disorders. The immunosuppressant drugs he takes also caused him to have multiple food allergies to seafood and all nuts. He struggled through his studies but gave his best effort and completed his PSLE in Monfort Junior at foundation level. He is now studying in Spectra Secondary School.
Sage’s love for cars and Lego has followed him through his life and his house is decorated with a massive assortment of Lego models from Star Wars to Ferrari, which family and friends bought for him to improve his motor functions. Just last year, Sage put up a custom-built Lego battleship, that he put together with his older brother, for auction at a fund-raising event for Make-A-Wish. His battleship was auctioned for $1,800 to Ferrari Challenge Driver, Mr. Martin Berry, before it was donated back to Sage where he has his Lego model taking pride of space in a glass case at home.
Sage has also shown a keen interest in visual art, participating actively in our programmes such as Acrylic Pour and Digital Drawing. He also took part in Dreamseeds Arts Fest 2018 to design a tote bag which is being sold to raise funds for his peers in Club Rainbow. To cultivate his interest and recognize his commitment, he has been receiving the Talent Development Fund for the past few years and was also selected to take part in the Collaborative Storytelling Illustration Programme with Darel Seow.
For Cindy, Sage’s battle with his illness has finally stabilized, and she is eternally grateful that it had a happy ending. While she still worries for Sage’s future, she is also positive that Sage will grow to be able to take care of himself fully and be more independent one day.
Cindy would like to stress the importance of early newborn screening and urges all young parents to send their babies for the screening to detect any genetic disorders early, which can then be addressed promptly. Regardless, she is immensely proud of how far her son has come and is looking forward to the many new experiences and opportunities that lay ahead for her son.
Keen to help other children and youths like Sage? 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: Charlotte Leong
Photo credits: Josh Wijaya
Gessica Peh, Age 5
Gabriel Peh, Age 8
Born at 7 months, Gabriel Peh was a pre-mature baby with a very low birth weight of 1.1kg and had to be hospitalized for the first three months of his life. A lung disease saw him being frequently hospitalized till his condition improved. He was also diagnosed with Autism Spectrum Disorder (ASD). Gabriel was subsequently referred to join Club Rainbow (Singapore) (CRS).
Prior to his birth, doctors told Jasmine that Gabriel would suffer from a whole host of medical problems. Right after birth, Jasmine only got a fleeting glance of Gabriel who was whisked away for a series of medical checks. Jasmine had to endure the challenge of looking after baby Gabriel almost single-handedly for six months as her husband had been posted overseas for work.
To focus on giving her son complete care, which primarily involved bringing Gabriel for numerous medical appointments, Jasmine quit her job. Her consistent efforts paid off when his Chronic Lung Disease showed steady signs of improvement when he turned 3.
It was during the course of this period that Jasmine started Gabriel on speech therapy classes. However, despite all the effort, Gabriel is primarily non-verbal and has genuine difficulties in articulating his words. Jasmine recalled the days when she would press on with sending Gabriel to and fro school despite being heavily pregnant with Gessica, her second child. “A teacher once told me that my son could not make it... It was very hurtful to hear that about Gabriel.”
In her early years, Gessica would encounter frequent meltdowns adding to Jasmine’s pre-existing problems of exorbitant medical bills and providing care for two young children, of whom one had special needs. Nonetheless, she remained resilient and pressed on to seek help for Gabriel.
When CRS first started offering speech therapy for beneficiaries, Jasmine applied for speech therapy for him. It took two speech therapy sessions in CRS for the therapist to discover that Gabriel was suffering from Ankyloglossia – a condition which meant Gabriel was literally tongue-tied and required surgery to improve his speech impediment.
After the oral surgery and a minor surgery to Gabriel’s eye as his eyelash was growing inwards which was causing irritation, Jasmine saw marked progress in her son’s development. Over the next two years, Gabriel grew more confident and his personality and individualism began to take a foothold. These milestones gave Jasmine much joy and allowed Gabriel to grow and give him more independence. She was gaining some respite from her initial difficulties. She would affirm her son by saying that, “If you are brave enough to do it and if there is improvement, I’m proud (of you).”
Jasmine describes her son as an understanding, obedient and well-disciplined boy with a vivid imagination and a flair for the arts. During Kris Kringle, a Christmas event organized by CRS, he received a Lego set, planting in him the seed of love for Lego blocks. Gabriel gushes over his assortment of Lego Police Stations.
Currently, Gabriel is a Primary Two Standard pupil at Pathlight. He is able to manage his studies and has been consistent in obtaining good grades. Before they moved to Hougang, the family lived in Bukit Batok and Jasmine knew it was only practical to send Gabriel to school via the school bus. However, both Jasmine and her husband were fearful of Gabriel experiencing a meltdown on the bus. Thus, they made arrangements to reach Pathlight School in a cab just so that they would be able to comfort him in the event of a meltdown.
Over time, Jasmine developed the faith that her son would be able to manage his emotions and has entrusted him with the house keys and even given him a mobile phone to contact her. On her decision to do so, she shared, “I have to teach my children survival skills like locking the door and giving them a phone so they can always contact me in case of emergencies.” She then channeled her energy to her daughter, Gessica who at 3 years of age, was diagnosed with high-functioning ASD. This condition coupled with behavioral issues, made looking after Gessica an energy sapping task. On several occasions, she would refuse to listen to Jasmine and choose to go about her own tasks, throwing tantrums and having meltdowns when she felt Jasmine was being too harsh and unreasonable. There were also several instances when Gessica would wander away on her own and get lost in public as well. When Gabriel started having tuition at CRS’ satellite center in KKH, Jasmine met Sally Ong, a KKH senior center executive from CRS. Observing Gessica’s frequent meltdowns whenever she turned up at KKH with Gabriel, Sally suggested that Jasmine seek help for Gessica by enrolling her as a beneficiary of CRS.
The silver lining in this entire situation is the endearing relationship that Gabriel and Gessica have as siblings. Jasmine found solace in the fact that her older child could take care of his sister by ensuring her safety at traffic lights, even when she was at her wits end. With the combined effort of Club Rainbow’s Occupational and Speech therapies, Gessica started to develop well and is able to communicate her feelings in a positive manner. She seldom experiences meltdowns, has shown improvement in her behavior. Things are beginning to pick up for Jasmine again.
As a mother, Jasmine’s hopes and dreams are like any other.
“I wish for them to be independent. I tell them it’s important to take care of each other. You cannot rely on others, only rely on yourself. In life, I have fallen down, experienced financial instability, but I have emerged strong and I see the light of hope again.”
Keen to help other children and youths like Gabriel and Gessica? 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: Charlotte Leong
Edited by: Azeena
Photo credits: Josh Wijaya
Avin Foo, Age 15
Avin has suffered from epileptic fits since he was born. As he grew up, performing simple tasks such as tying his shoelaces and buttoning his shirt proved difficult. Abandoned by her husband, his mother, Mdm Lee, took it upon herself to teach him everything she could - and she did so tenderly. She bought him bubbles and candles to practice blowing. She patiently and painstakingly showed him how to move his fingers to improve his motor skills. Before long, Avin, the youngest of her three children, was living the happy, fairly normal life of an able-bodied boy, able to talk and eat on his own with only a mild intellectual disability.
Then tragedy struck. In 2015, when he was 12, a severe epileptic attack came at the worst of times – a public holiday. By the time the ambulance finally arrived, seizures had set in that lasted the entire journey to NUH. He was unconscious by the time paramedics wheeled him into the emergency room. Although Avin spent 107 days in hospital, including two weeks in intensive care, Mdm Lee rarely left the waiting room. Exhausted and stressed, she stood by as her little boy endured the pain of operation after operation, dialysis, blood tests, and being tethered constantly to a drip.
“It was very hard to sleep,” she recalls in Mandarin. “By 8pm, the nurses will turn off the lights whether you want to rest or not and the next day turn it on again at 6am whether you are still asleep or not.”
Since his release from NUH three years ago, Avin has been paralysed from the neck down, bed-ridden, and able to move only his head, eyes and mouth. He can no longer write, speak or move. Mdm Lee is not sure if he even understands his condition or recognises his home. Her estranged husband works in Malaysia and returns only once a week to provide money for her, Avin and their two daughters but nothing more.
So, Mdm Lee has committed herself to caring for her son 24 hours a day. She administers more than 10 different medicines and vitamins. She inserts a tube into his stomach through his nose five times a day to feed him two types of milk. Every four hours, she checks on him, change his pampers, massages him and turns him over to prevent bed sores. While she is devastated by her little boy’s condition – his intellectual disability and epilepsy now further complicated by Spastic Quadriplegia – she does whatever she can for him. “If other helpers can do it,” she says. “I can do it too.”
Avin has also developed Type 1 diabetes, so Mdm Lee gives him daily Insulin Injections too. “I used to be very afraid of needles,” she says. “But now it’s a small thing that I wouldn’t fear anymore.” She was taught all these skills by the nurses and doctors that she became acquainted with during the long months at NUH. Regulating Avin’s intake of food and water, monitoring his insulin levels and administering his many medications is a struggle and Mdm Lee knows it must also be uncomfortable, possibly even painful, for her son. But she keeps in mind that it is necessary for his well-being – and that’s what motivates her to never falter.
“There are other children out there worst off than Avin,” she says.
“I just hope Avin will stay healthy, peaceful and not be in pain,” she says. “I know that Avin may leave me anytime so each morning when I wake up and see his eyes open, I thank God.”
She also says that as Avin cannot communicate with her, she relies on her Mother’s intuition to figure out what’s wrong with her son or what’s making him uncomfortable and tried to adjust for it accordingly.
When communicating with her son, she will say: “Come on, it’s time to wake up. Mom will cook for you. Don’t you want to play computer games?”
Despite Avin’s disabilities, Mdm Lee still sends her son to school at Rainbow Center on Margaret Drive. She wakes up at 5am to prepare his medications and food before going downstairs where the school bus picks them up at 6.30 am together with 4 other wheelchair-bound children. Mdm Lee stays with him at school until 12.30pm before they head home together.
As a result of the constant attention her son needs, she never gets a good night's rest. She is only able to sleep two to four hours a day. She puts on a courageous front and is grateful for the chance to be with her son and do all she can for him but at the end of the day, she is emotionally, physically and mentally drained.
“I cannot give up. Who will look after my son if I do?” she says.
Club Rainbow Singapore (CRS), thus, has been there to help Mdm Lee. It provides monthly supportive counselling to help her manage the stress of caring for Avin, something for which she is most grateful. “If I am not happy and not healthy, how am I to look after my son?” she says.
Her family receives monthly food rations and diapers from the centre and was also recently awarded with a refrigerator donation. Moreover, CRS has also provided transport support for Avin to fetch him to and from hospital for his monthly medical appointments at NUH.
Although it barely begins to relieve the strain of caring for Avin, all this support does go a long way to ease her financial and emotional burden and remind Mdm Lee that she isn’t alone.
Her philosophy? “Live in the moment and take one day at a time. Don’t live in the past. You wouldn’t be happy.”
“As long as I breathe and Avin breathes I will love and care for him.”
Keen to help other children and youths like Avin? 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 Charlotte Leong
Edited by: Paul Zach
Photo credits: Josh Wijaya
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
Durrani Asyraaf Bin Kamaluddin, Age 7
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.
Written by: Karen Yong
Photo credits: Josh Wijaya
Muhammad Azri Firdaus Bin Nor Azlan, Age 11
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!”
Written by: Jiayan
Photo credits: Josh Wijaya
Eriyndatee Binte Mohd Rizal, Age 10
Mohammed Eriyandee Bin Mohd Rizal, Age 17
Mohammed Eriyndanee Bin Mohd Rizal, Age 15
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’.”
Written by: Eileen
Er Wen Hao, Age 23
Lim Jun Rong, Age 5
S. Hema Viganeshwari, Age 20
Mohamed Sayed Sameer Bin Abdul Kadir, Age 15
Abdul Qayyum Bin Rahmat, Age 10
Jonathan Tan Shao En, Age 19
Andy Soh Hung Zheng, Age 16
Toh Wee Yang, Age 18
Nur Jannah Binte Abdul Mutaleb, Age 3