Muhammad Sayfullah Bin Mohamad Sahrin, Age 16
Shaista Farihah Binte Mohamad Sahrin, Age 14
Photo Credits: Josephine Poh / Article by Karen Yong
When the doctors diagnosed Muhammad Sayfullah Bin Mohamad Sahrin (“Sayfullah”) with spastic quadriplegic cerebral palsy at around one years of age, Mdm Siti Fadillah Binte Mohamed Noor finally got an answer to why her son had not reached the usual baby developmental goals. The prognosis conveyed to Mdm Siti was poor. It was a condition with no cure. The chief concern on her mind then was what is going to happen to Sayfullah when he gets older? Mdm Siti knew that she could not simply let things be. Her family was counting on her to be their pillar of support; she decided she must rise up to that challenge, for both Sayfullah and her daughter Shaista Farihah Binte Mohamad Sahrin (“Shaista”).
One would not have guessed that behind the big bright eyes of the now sixteen-year-old soft-spoken Sayfullah, lies a tech-savvy boy bursting with creativity and determination. Through financial assistance by Club Rainbow, Sayfullah has been able to attend many events and activities at subsidised costs. A digital drawing course in particular has led Sayfullah to embark on a new and exciting journey. When he took part in the course organised by one of the Club’s partners, he showed much interest and talent in it. With help from the Club’s Talent Development Fund, Sayfullah now takes regular digital art lessons from Junior Art Lab in the comfort of his home. His digital designs are created by moving a joystick connected to a laptop, and he is the proud owner of the Instagram account “Sayfullah_designs”, a space where he shares with others the digital art he creates. Though still a work in progress, it speaks of much potential, and is a materialisation of Mdm Siti’s hopes and dreams for her son. Mdm Siti has been worried for a long time about how Sayfullah may be financially independent in the future. However, she now has hope that Sayfullah’s art could one day be printed on merchandise for sale, and is excited to see what other prospects it might bring for Sayfullah.
Sayfullah’s artwork speaks of much more than its cute appearance. He broke down when asked about his drawing of Fifi, a pet parrot he had previously which has since passed on. Art has undeniably now become a way in which Sayfullah expresses his innermost emotions. Mdm Siti is thankful that the days when Sayfullah would get frustrated and cry because he cannot express himself are now past, as he has been learning to communicate with the help of particular applications on the iPad. However, the costs of such technology and its affordability in the long run remain a concern. Therefore, tough as it may be, Mdm Siti is not letting up on making sure that Sayfullah is also doing the relevant therapy exercises which helps him to build conventional communication skills.
Sayfullah had previously benefitted from physiotherapy and occupational therapy sessions at Club Rainbow. It helped him to be better with independent living, using his motorised wheelchair, and feeding himself with minimum spillage. Mdm Siti found that these sessions at the Club Rainbow complemented the therapy that Sayfullah received at the hospital well. She felt that she could freely share her ideas on what goals she hopes for Sayfullah to achieve and there was good team effort in working towards those goals. The Club has noted Mdm Siti’s positive feedback on its physiotherapy sessions, and have put in an application for Sayfullah to have another cycle of physiotherapy sessions at Club Rainbow. Recognising that a little goes a long way into making life better for its beneficiaries, the Club has also provided Mdm Siti with practical assistance in the form of food and diapers for Sayfullah.
Younger sister Shaista is an important part of Sayfullah’s life as well. Mdm Siti has looked upon Shaista to help out with Sayfullah’s care since she was young, and she takes it all in her stride. Previously diagnosed with dyslexia herself, coupled with a history of costochondritis and apophysitis, Shaista is no stranger to medical conditions and ailments. Fortunately, her dyslexia has been overcome through much hard work and effort. She participated in a reading programme organized by one of Club Rainbow’s education partners, and she also spent many hours practising on her own and with her mother’s support. Shaista’s efforts were affirmed with her receipt of the Club’s yearly bursary award. She was also selected to receive the Exemplary Sibling Award from Club Rainbow recently.
The saying goes, “If I have seen further than others, it is by standing on the shoulders of giants.” Sayfullah is blessed in that he has had the shoulders of giants like Mdm Siti and Shaista to stand on and has had the opportunities to pursue his interests and grow in confidence. Mdm Siti hopes that her son’s story can encourage others to never let things be, and to stay positive, smile always, be grateful come what may. The road that lies ahead for families with children of special needs might not be easy, but working with the child and achieving developmental milestones together will bring a sense of achievement and happiness like no other.