2 women advocating for cerebral palsy awareness

2026-03-07 - 23:03

Rafidah Rafizah Ahmad founded Gabungan Anak-Anak Palsi Serebrum (GAPS), inspired by her daughter Izdihar Janna. (Andrea Edmonds @ FMT Lifestyle) PETALING JAYA: Sometimes, being a strong woman isn’t about keeping up with men; it’s about making a difference. This International Women’s Day, a mother-and-daughter duo is changing the lives of children who cannot fend for themselves. Rafidah Rafizah Ahmad is the founder of Gabungan Anak-Anak Palsi Serebrum (GAPS), a non-profit organisation supporting the cerebral palsy community in Malaysia, now based in Cyberjaya. While it all began because of her daughter, 20-year-old Izdihar Janna, today both are active advocates. Janna was diagnosed with cerebral palsy at the age of four, a lifelong neurological disorder that affects body movement and muscle coordination. Born prematurely at 33 weeks, she experienced delays in early milestones. However, with early intervention, including occupational and physiotherapy starting at eight months old, Rafidah eventually quit her job to care for Janna full-time. Janna says she is proud of herself for being able to walk again. (Andrea Edmonds @ FMT Lifestyle) Speaking with FMT Lifestyle, Janna recalled her difficult experiences in primary school. “My teachers used to treat me like I didn’t exist, and I would get bullied a lot,” she said. Growing up within the GAPS community, Janna is clear about one thing. “I want more children with cerebral palsy to go to school and learn. I don’t want others to go through what I faced or feel restricted from discovering the world.” Determined to create change after witnessing her daughter endure bullying, Rafidah, 51, established GAPS in 2016. “I wanted to know more about her condition, but most of the information available was from overseas, and Malaysian parents weren’t very aware at the time,” she said. What began as an online support group has since grown into an organisation that provides physiotherapy and educational support to about 20 children. “I started thinking about breaking the barriers society had set for her,” Rafidah said. “I felt like I could do a lot more, not just for Janna but for others as well.” Janna plays a key role in GAPS, managing most of the organisation’s social media content. (Andrea Edmonds @ FMT Lifestyle) Janna’s journey is also a testament to perseverance, and each day she celebrates small but meaningful victories. “As I grew up, my body got heavier so I could no longer walk. From 2020 until last year, I tried to walk but could only manage a very short distance. “But this year, I can walk three rounds without stopping. I’m very proud of myself,” she said, adding that she can even play football aided by her walker. Despite not having a traditional education, Janna plays a key role in GAPS. She manages most of the organisation’s social media content – planning posts, scheduling them, and even editing videos. Posting every day requires discipline, but she thrives on the responsibility. “I’m obsessed with doing this,” she said with a laugh. Much of this progress, she admitted, is thanks to her mother’s constant encouragement to explore new opportunities. “Being a woman, there’s already a lot of discrimination. And if you are a woman with a disability, the discrimination is even worse,” she said. “As a wife and mother, if we don’t give our children opportunities and a voice, then no one will.” GAPS offers therapy and education to around 20 children with cerebral palsy. (Andrea Edmonds @ FMT Lifestyle) Rafidah, 51, believes women, especially mothers of children with special needs, possess extraordinary strength, describing them as “superwomen”. “They are not just mothers and wives. They are also doctors, nurses, drivers, teachers, and therapists for their children.” Rafidah herself is a Meta-certified community manager. In 2021, GAPS was recognised as one of the top 1% most impactful communities globally, selected from more than 14,000 applicants. “As women, you may sometimes feel like you’re not doing enough,” she said. “But I’m quite content now. It doesn’t matter whether my child is able to walk or not. What matters is making sure my child is happy with life.” As for Janna, she has big dreams for the future. “I want to be a TV host because I want to see my face on TV, and I love to talk,” she said with a smile. And her message to women everywhere? “Just be yourself and be happy like me.” Follow GAPS on Facebook, Instagram, and find out more on their website.