Abdul Qayyum Bin Rahmat, Age 10
The ever-spirited Qayyum and his mother Sharifah share a close, loving bond that resonates with the rest of the family (photo)
Qayyum is as you would expect any other 10-year-old to be: A jovial, playful boy with a gleeful devotion to superhero action figures and pizza. However unlike most other children his age, Qayyum was born with a genetic skin disorder called lamellar ichthyosis. Characterised by severe dryness and flaking of the skin, the condition also plays host to secondary effects such as the inability to perspire and short-sightedness.
“I was so shocked,” recalls his mother, Sharifah, of his birth. “I didn’t expect it when the doctor explained to us, I was very sad.”
“But the thing is, my husband Rahmat and I knew it was a challenge - for us, we think that if God gives us a challenge, it’s because we can do it.”
With great faith and enduring patience, Sharifah and Rahmat managed to overcome what seemed like an insurmountable task at the beginning. “When he was a baby, there was a lot of stress on me… He kept crying and we didn’t know why, because he couldn’t tell us what was wrong,” shares Sharifah. Rahmat recalls the period, with tenderness. “From the very first day when our son was born, our lives [have been] a never ending education… A huge part of our lives are really all about readjusting because of the attention that Qaiyoum requires.” They adopted common-sense solutions like regularly applying moisturizer to his skin for Qayyum to cope with the physical discomforts arising from his condition. Playtime has been limited to indoor activities like painting and drawing, which he has since developed a talent for.
Perhaps the greatest struggle faced by both parents and child is the harsh discrimination they continue to encounter on a regular basis stemming from people’s misconceptions about Qayyum’s skin disorder. With a heavy heart, Sharifah recalls an incident where she faced prejudice at a school Qayyum was once enrolled in. “I was very disappointed, very sad… I was actually down with depression, always crying in the middle of the night.” Qayyum has experienced his share of bullying, with previous incidents of name-calling and ridicule from some of his peers in school. “They call me ‘weird’ and ‘nerd’,” shrugs Qayyum. Ignoring them, he chooses instead to focus on his studies so that he can grow up to be like his idol, Ironman.
In the face of their daily challenges, the family has gotten closer. “Our lives [have] changed remarkably,” smiles Rahmat. “We learnt that we have become more emotionally conscious and our two older children had to be mentally disciplined at early teenage years.”
““We have learnt to be more grateful; more patient,” adds Sharifah, “I believe when these things happen, it actually makes our bond stronger. With all this hardship, my children have grown up not being materialistic - they know what is a priority, and what is not.”
Rahmat is equally thankful for the support that Club Rainbow has extended to them at each step of the way. “Although we didn’t know much about CRS at first, we were really excited with the prospect of meeting people whom we believed are big-hearted to children. In addition to selfdevelopment classes, outings held by Club Rainbow have allowed Qayyum to have fun in a loving, unjudging environment. “During those times I saw the faces of every child beaming with joy. I could swear every kid had a fantastic time. And who wouldn’t?” recalIs Rahmat. “At CRS he learns that it’s the human spirit that gives and that matters most. There will be a time when he needs to remember what made him feel special, not who. And truly it’s the Club Rainbow of Singapore and its people that made it happen.”
Sharifah shares in her husband’s hopes for the future, citing a greater need for public awareness of children with special needs. For now, she is content with the boy Qayyum is growing up to be, day by day. “He is very brave… We hope that as he grows, he will give back to Club Rainbow one day.”