The little boy teaching resilience, one step at a time

PETALING JAYA: Muhammad Nurfattah Nurfahmy defied the odds from the beginning, long before he charmed tens of thousands of followers online with his infectious smile.

Today, the three-year-old is the heart of the Instagram and TikTok accounts “Raising Fattah”, which have attracted over 70,000 followers.

His story, however, began with uncertainty. While his mother, Nurul Fateha Abdul Rashid, was pregnant, she and her husband, Muhammad Nurfahmy Fareed, learnt during a scan that there were complications.

The Singaporean couple was advised that their baby, their first child, was unlikely to survive the full term.

“We were told to terminate the pregnancy, but we decided to hold on because of our faith,” Fahmy, 32, told FMT Lifestyle.

For the rest of the pregnancy, they returned for check-ups every two weeks, relieved whenever they heard their baby’s heartbeat.

Still, the uncertainty weighed heavily on 31-year-old Fateha. Although she had planned to leave her job as a research assistant after giving birth, she decided to resign earlier.

“It was taking a toll on me, knowing he could pass away at any moment. It was very unsettling. I never knew what to expect,” she said.

They were also warned that even if Fateha carried the pregnancy to full term, there was a very high chance of stillbirth. “We were mentally preparing for a burial and funeral,” Fahmy added.

Fattah defied the odds.

“When he was born, there was pin-drop silence. We thought that was it. Then he started moving and trying to cry,” Fahmy recalled.

“The day we thought would be the end turned out to be a whole new beginning.”

Soon after came another life-changing moment: their baby was diagnosed with arthrogryposis multiplex congenita (AMC), a rare condition that affects mobility.

Specifically, Fattah has type 2B AMC, also known as Sheldon-Hall syndrome, which is characterised by joint contractures that limit movement in his hands and feet.

The diagnosis came as a shock: not only had the couple never heard of the condition, there was no history of it in their family.

Two weeks later, the couple took their son home and found themselves embracing “unexpected” parenthood. “We didn’t even have a baby cot or a single diaper because we’d been completely unprepared to bring him home,” Fahmy said.

The years that followed were filled with hospital appointments, surgeries and therapy sessions, including physiotherapy and occupational therapy.

For the first two years of his life, during which time the family lived in Johor Bahru, Fattah made as many as five hospital visits a week and underwent his first surgery at about three months old.

Yet amidst the appointments and procedures, his parents found themselves captivated by the little boy he was becoming.

Today, Fateha describes Fattah as wise beyond his years, with a knack for reading body language and sensing emotions.

He is endlessly curious, always asking questions and trying to understand the world around him. He also loves having his parents read to him.

Despite his condition, he approaches challenges with determination. While many children his age run freely, every step Fattah takes is hard-earned.

Fahmy eventually began documenting the family’s journey through “Raising Fattah”, hoping to share their experiences and speak openly about the realities of raising a child with AMC.

The platform gradually grew into a supportive online community. Followers would offer words of encouragement, celebrate Fattah’s milestones and, at times, even contribute towards his care.

Of course, there are difficult moments. “On some days he says, ‘I don’t want to go for therapy anymore. I don’t feel like walking anymore. It’s painful and tiring,’” Fateha shared.

Yet, somehow, he always finds the strength to take another step forward.

For Fahmy and Fateha, their son has taught them gratitude, patience, resilience, and the importance of embracing uncertainty.

As goal-oriented people, they once measured success by outcomes. But raising Fattah changed that. “Success is going through the journey itself,” Fateha said.

Fahmy agrees. “Fattah reflects what it means to never give up, to be resilient and to take life one step at a time. Even though he faces many challenges, he’s still smiling.

“When we see how hard he works for every step, every movement and every milestone, it reminds us not to take things for granted.”

Follow Fattah’s journey on Instagram and TikTok.