This Mother Is Recognised By Meta For Empowering Families With Cerebral Palsy In M'sia
"My daughter inspires me. And I believe, with my capability and passion, I can do more than just help her alone," said the 47-year-old mother of two.
By May Vin Ang — 09 Sep 2022, 10:25 AM
Meet Rafidah Rafizah Ahmad.
Out of love for her daughter, she created a community of support for parents and individuals with cerebral palsy (CP) in Malaysia.
The lights of Rafidah's life are her two children: her 21-year-old son, Ahmad Izat, who is currently studying engineering in university, and her 17-year-old daughter, Izdihar Janna, a teenager with CP and a disability youth advocate with UNICEF
Besides being a passionate parent, Rafidah is the founder of Cerebral Palsy Malaysia, also known as Gabungan Anak-Anak Palsi Serebrum (GAPS), a non-governmental organisation (NGO) dedicated to educating and empowering the CP community in Malaysia.
The mother of two said that she founded the organisation with the goal of creating possibilities for people with CP, as well as to inspire and raise awareness about the developmental disability among families and the general public.
Speaking to SAYS, Rafidah said her journey as an advocate began in 2005, when she had a challenging pregnancy and gave birth to a premature baby girl, Janna
Along with her husband, Adzly Anuar, who is a lecturer at a local university, the mother soon realised that their daughter was slow in achieving her developmental milestones.
"There was not much I could find on the Internet because I did not know what, where, or who to begin asking about her condition," Rafidah recounted.
Eventually, at four years old, Janna was diagnosed with CP, a neurological disorder caused by damage to a child's developing brain, whether it be in the womb, during delivery, after birth, or during infancy.
CP is the most common motor disability in childhood, affecting three in every 100 live births in the world. It affects a child's movement, structure, and coordination, and is a lifelong disability.
However, Rafidah said that with the right intervention and support, the disorder's complications can be reduced, enabling individuals with CP to be more independent, achieve their true potential, and be active members of society.
The NGO founder knew there was not much local information about CP in the country, so she decided to help other parents, knowing how lonely the journey could be without support
"I first started a Facebook group, and soon after that, a community group. But as it grew, I wanted to do more to empower the community as a whole and not just the parents," Rafidah said.
Thus, in October 2016, she established GAPS, which provides information, resources, and socio-emotional support for families, as well as runs awareness campaigns for the public.
"My daughter, Janna, inspires me and is the reason why GAPS is here now. I believe, with my capability and passion, I can do more than just help her alone," Rafidah said, adding that she left her full-time job as an engineer to take care of her daughter.
Now, at 47 years old, Rafidah is also a Meta-certified community manager. Last year, she was selected as one of the top 1% of community leaders of the most impactful communities globally from more than 14,000 applicants in the Facebook Community Accelerator Programme.
Rafidah said her goal is to see Janna become a confident young person with CP who is able to take over the advocacy role in GAPS
"Meanwhile, my goal for GAPS is to become a key player, changemaker, and voice for the CP community at large," she said, adding that awareness of the disability in Malaysia is low, not only among the public, but also among parents of children with CP themselves.
The NGO founder wants everyone to know, especially families and individuals with CP, that they too have the same rights and opportunities as everyone else to participate in the community.
"Everyone can help by getting to know more about the disorder. People should also not forget to include individuals with CP in activities and not use public facilities meant for the disabled," she added.
She also hopes that the public would donate to GAPS to help them become a one-stop resource centre for all families with CP in Malaysia.
For more information, check out Cerebral Palsy Malaysia on their website and social media.
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