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