Muhammad Ridhwan Bin Masli , Age 13
Nurin Insyirah Binte Masli, Age 8
Photo Credits : Joshua Wijaya
Being the firstborn of the family, parents of Muhammad Ridhwan Bin Masli was ecstatic to welcome his arrival 13 years ago. Ridhwan’s parents had high aspirations for their son. They had many dreams ahead but everything had to be put on hold when they discovered Ridhwan’s congenital conditions.
Before Ridhwan was born, his parents both learnt that Ridhwan had several complications noticed during scans and check-ups. Despite having known of such news, his parents took their stand to still proceed with the pregnancy. At 4 days old, little Ridhwan underwent a brain shunt procedure due to a buildup of fluid inside his brain, known medically as hydrocephalus. The shunt was inserted to drain off excess fluid found in his brain. Not long after, at 1 month old, Ridhwan went for a reconstruction surgery to expand his skull as it was soon found out that he was detected with Pfeiffer Syndrome. The prevention of his skull’s growth has affected the shape of his head and face, which had also resulted in Ridhwan’s diagnosis of profound hearing loss. Subsequently, the 1-month-old makes frequent visits to the hospital for multiple reconstruction surgeries due to infections in his lungs, more known as pneumonia.
Ridhwan’s mother, Juliana, found it difficult to come to terms with the news at first. She was even in a phase of paranoia and recalls that her husband often asks, “Why aren’t you feeling sad at all?” Juliana admits that she was in denial because she found it a challenge to grasp Ridhwan’s pains and conditions, knowing that he is their firstborn. She said: “We initially had a lot of plans and hopes for Ridhwan. We thought of many things we want to do in the future together”. As conditions started to worsen, Juliana had to make the sacrifice to trade in her full-time job as an accountant to be Ridhwan’s main caregiver at his age of 3 years old.
In 2014, Ridhwan was admitted to the hospital due to breathing difficulties and was eventually required to be intubated. As it was learnt that the tube could not be inserted for long, Ridhwan had to opt for a different alternative. He had to go through yet another reconstruction surgery to aid in his breathing. Up to date, he breathes through a tracheostomy where an opening is created at the front of the neck for a tube to be inserted into the windpipe.
“Ridhwan is aware of his constraints. He knows that he is special and not like a normal child and because of that, he has low self-confidence and was often shy to talk to others but I notice a change when we started to join Club Rainbow.” Juliana says, “He always gets excited and looks forward to events so he can meet his friends”. Ridhwan’s younger sister, Nurin Insyirah Binte Masli, also actively attends events together with him. The 8-year-old has an inflammatory skin condition, Atopic Dermatitis (AD) (eczema) and is shared to be a cardiac patient due to her diagnosis of Floppy Mitral Valve (FMV). Together with her elder brother, Nurin is also a beneficiary under Club Rainbow.
The family of five often participates in events such as Dreamseeds Arts Fest, Club Rainbow’s Annual Party (2018) and Camp Rainbow (2018). In fact, for this year’s Dreamseeds Arts Fest, Ridhwan will be performing in the concert. Nurin’s and his artworks will also be displayed at the arts exhibition and turned into merchandise for sales. Ridhwan puts in tremendous effort into his artworks as it is where he feels that he can express himself best. Both siblings and their mum are also active participants of weekly events organized by Club Rainbow. Juliana loves to attend the events as she gets the opportunity to interact with other caregivers and take her mind off her caregiving duties.
Ridhwan previously attended Art Therapy and it helped him to gain confidence and become more expressive. Compared to when he started his sessions, the 12-year-old is now willing to open up and exhibit more of his emotions.
In 2017, Ridhwan received the Education Award from Club Rainbow for good academic performance. His family is also grateful to receive the Bursary Awards as it aids to supplement their household income.
“Ridhwan loves Nerf guns, all sorts of it.” Juliana shares: “Automatic ones, small ones, big ones. Ridhwan has everything.” He has a wide range of collection at home and its being widen through gifts from school and Club Rainbow’s event, Kris Kringle Christmas Party. When he is not playing with his Nerf guns, Ridhwan will take time out to complete house chores. Ridhwan is always seen actively cleaning at home. He likes doing house chores such as to clean his room, do the laundry and vacuum the house. “He likes to do a lot of housework! His younger sister does not even need to do anything anymore,” laughs Juliana.
The experience of having a child like Ridhwan has been a test of strength and courage for both Juliana and her husband. However, she accepts her fate as a blessing in disguise as she shares that, having Ridhwan has also allowed her to relive her aspirations of being a nurse back in the day as being his main caregiver meant constant hands-on care and scrutinous supervision. When asked if she has any messages for parents of children with chronic illnesses, Juliana advices: “Just always persevere and endure everything. Take things one at a time.”