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’.”