Son, 16, walks thanks to the gait trainer
With the aid of a gait trainer given to the family, Madam Zainon's son Huzairul can finally move around freely
Like any other mother, Madam Zainon Arshad was ecstatic to see her son's first steps.
Except that her son, Huzairul Izwan, is 16 years old and managed it only recently.
Huzairul suffers from cerebral palsy, a condition that affects his motor skills, and he had to move around in a wheelchair.
It was a poignant moment for Madam Zainon, who is in a wheelchair herself because her legs were amputated due to gangrene five years ago.
She has been suffering from diabetes for 30 years and was diagnosed with kidney failure five years ago.
"It was my dream to see him walk, and it came true," said Madam Zainon, 48, a housewife.
Huzairul was a premature baby and the couple's second child. But they thought everything was fine until he came down with a high fever when he was just six months old.
Madam Zainon said: "After six months, he got fits. So I took him to the hospital for a check-up, and the doctor said he had brain damage."
And then came the diagnosis of cerebral palsy.
The years that followed have been difficult ones. Madam Zainon told The New Paper that finances have been tight.
She said: "It's very difficult to handle. We have three children to take care of, one of whom has special needs. We also have to pay for my dialysis appointments and Huzairul's school fees as well."
Their father, Mr Hussman Abdul Bakar, 52, is the sole breadwinner. He is an administrative assistant and takes home $1,800 a month. Madam Zainon supplements this by baking for friends and family.
SUBSIDIES
They have subsidies and receive assistance with the health bills and school fees.
Madam Zainon said that despite all this, she has never felt pain over Huzairul's condition.
She said: "I love him so much, he's my son no matter what. This is what God gave me and I accept that."
Huzairul's school fees at the Cerebral Palsy Alliance Singapore School (CPASS) are subsidised so they pay only about $200 a month.
Things got harder when Madam Zainon had her legs amputated five years ago due to gangrene after she was diagnosed with kidney failure.
They had to hire a helper as she was unable to take care of Huzairul due to her condition.
Their situation improved earlier this year when Madam Zainon saw a post on Facebook about the Rifton Pacer gait trainer that could help Huzairul walk.
She said: "I showed it to the president of the Muslim Kidney Action Association, Mr Ameerali Abdeali. I said it was very expensive and that I couldn't afford it.
"But Mr Ameerali told me they would ask for donations. I didn't expect them to raise the money within two days."
The Muslim Kidney Action Association (MKAC) got the gait trainer in March and gifted it to Madam Zainon and Huzairul.
With the gait trainer, Huzairul has been able to move around the house by himself.
And Madam Zainon told The New Paper he has been much happier since receiving the gait trainer.
She said: "He loves to walk. You can see how happy he is whenever he uses it.
"Sometimes, he even uses it to stand while watching TV in the evenings."
The family can now make trips to the void deck, which they enjoy very much. They spend almost an hour there watching Huzairul move around.
The void deck gives him enough space to move around in his gait trainer. But Mr Hussman or older brother Hairul Amirin, 18, are on hand to push the trainer around when needed
It has evolved into a family bonding session.
Madam Zainon said: "Huzairul loves coming down to play. It's a form of exercise for him because it helps to strengthen his leg muscles.
"Sometimes, he would even point his finger downwards, a way of telling us he wants to go downstairs."
She added: "It's tiring, but never mind. You can see how happy Huzairul is when he's on his walker.
"This is our family bonding time. It's under the block, but I don't care because we're spending time together."
Muslim kidney association raises $4,000 in two days
The Muslim Kidney Action Association (MKAC) raised a total of $4,000 within two days through an e-mail appeal to help buy the Rifton Pacer gait trainer for Huzairul Izwan.
It is designed for people with cerebral palsy and other disabilities and it helps strengthen muscles and improve cognition.
His mum, Madam Zainon Arshad, who has kidney failure, is a member of the MKAC. She has been visiting the association to take classes like baking and basic computer skills, to improve herself.
She knows the staff of the association as friends, and one day, she told MKAC president, Mr Ameerali Abdeali, about her search for a Rifton Pacer gait trainer.
He told TNP they decided to help Madam Zainon as she was an inspirational lady.
He said: "Despite both her legs being amputated, she is always cheerful. She regularly attends our skills upgrading classes and shows much enthusiasm in the classes.
ROLE MODEL
"To us, she is a role model for other kidney patients, so we felt the need to go the extra mile to make her dream of seeing her son walk come true."
MKAC reached out to some donors through an e-mail appeal and a total of $4,000 was raised in just two days.
The Singapore Indian Association was one of the donors. They donated $1,000 to help purchase the gait trainer. Mr K. Kesavapany, president of the association, said: "I was truly amazed by the efforts made by Madam Zainon to locate the Rifton Pacer on the Internet.
"She knew that it would help in Huzairul's mobility and bring joy to him, so we're happy that we're able to play a small part in helping Madam Zainon realise her dream."
MKAC placed an order for the gait trainer in Januaryand it arrived in March.
Madam Zainon said: "I'm so thankful for this, and very happy, because the happiness when he uses his walker makes me happy, too."
17 million with cerebral palsy worldwide
Cerebral palsy is a physical disability that affects movement and posture, and can include a range of associated physical and cognitive impairments.
It is one of the most common physical disabilities in children and is non-curable.
Sometimes a child may not be diagnosed immediately at birth, and may only begin to show signs at a later age when they do not meet certain developmental stages (such as rolling over or sitting up).
While no two children with cerebral palsy are alike, it is possible for children with cerebral palsy to walk and talk after professional therapy.
This includes physiotherapy, occupational therapy, speech and language therapy.
While there are 17 million people with cerebral palsy worldwide, there are no official statistics about the number of people with cerebral palsy in Singapore.
However, it is estimated that three per cent of the population in Singapore are made up of persons with disabilities.
In 2013, it was reported in the Business Times that no official central registry for persons with disabilities exists in Singapore.
The Cerebral Palsy Alliance Singapore (CPAS) was reported to be considering the idea of hosting a central registry for cerebral palsy cases, so as to get data from hospitals in order to reach out to families as quickly as possible.
TNP reached out to the CPAS to see if there was an update to this registry, but they would give no further comment.
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