What does a parent do when doctors give their child only 24 hours to live? How do they react if the very people meant to provide healing, tell them their child is going to die?
Eighteen years ago, this was the unspeakable shock that Laudium couple Fiona and Aslam Rahman were left with, when their daughter, Imaan Rahman, was born. Imaan was born three months premature at Unitas Hospital and was immediately rushed to the ICU where, according to medical personnel, she stood no chance of survival. "She looked like a skeleton," her mother, Fiona recalled, "I had miscarried twins before Imaan, so she was my miracle baby."
Little Imaan spent 100 days in ICU, but by some miracle, she survived. She was diagnosed with Cerebral Palsy a year later, and yet again, doctors were the bearers of doom. "They told us our daughter would never be able to talk, function physically or do anything for herself," Fiona recalled.
The emotional mother continued, “Imaan is a Quranic name that means 'faith' and this is what we as a family held on to. Despite what anyone said and regardless of the fact that we did not have much support, we still held onto faith and fought for our child. Eighteen years later, that fight still continues”. Not so long ago, brave mother, Fiona (44), decided to create an entity that would provide a form of support, which she so desperately needed while raising Imaan, but never had. Fiona’s aim is to assist other families like her own. ‘Kids of Faith Community Support Group’ is a registered NGO that Fiona established, for parents of children with special needs, where they can find assistance, encouragement and connection with others sharing a similar experience. The NGO regularly has open days and social gatherings. ‘Kids of Faith’ will be hosting the first ever special needs holiday programme in Laudium, this April, at no charge.
Imaan's father, Aslam Rahman (46), passionately added, "It's not about money or making it into a business, like some other organisations. This is our daily life, our passion. What ‘Kids of Faith’ tries to do, is to encourage our society to understand that these children – never mind the fact that they look different or act differently – are very much a part of our community and we should treat them as such. Parents of children with special needs, shouldn't have to hide them away."
Today, Imaan is a bubbly 18-year-old who lives her life to the fullest. Although she faces challenges, Imaan is a proud drum majorette for the Pretoria Muslim Youth Brigade and tries to enjoy the fanfare of any teenage girl. "I always thought I would have to teach my child about the world. Turns out I have to teach the world about my child," Fiona said while smiling affectionately in her daughter's direction.
...another family speaks about their child with special needs
Another Laudium couple who has a special needs child, are Venita and David Ernest of Bengal Street. The couple adopted a girl with special needs as their daughter, when she was merely three months old. Simone, now 28, also has Cerebral Palsy. Because she was born prematurely at 27 weeks, the base of her skull was still open. Venita, who knows Fiona, supports Fiona’s dream to create a support group for children with special needs in the area, and wholeheartedly offered her insight in this regard. "We definitely need a space for children with special needs in Laudium or nearby, because they are often ostracised by our society. Yes, our daughter Simone is challenged but she's come a long way and sometimes I wish people would notice that. She can walk, talk and sit and she loves music. They (children with cerebral palsy) have a penchant for music,. It's beautiful to see, and she doesn't ever forget anything you tell her."
Fiona Rahman concluded by saying, "A disability can occur in children across any religion, any race, or any age. All children matter! Whoever wants to join us, whether for support, assistance or any other reason, please come out and support us. Being a part of this community; these children are your children too."
*The month of March is recognised as Intellectual Disability Awareness Month. Any family who has a child with special needs and/or any individual who wants to get involved in any way – whether to give or receive support – can contact the Laudium Sun or Fiona Rahman on 078 457 9619, for further information.
A proud Imaan wearing her Pretoria Muslim Youth Brigade uniform.
Venita, Simone and David Ernest, at their home on Bengal Street.
Simone Ernest (28) has a penchant for music.
Imaan Rahman (front) with her parents, Fiona and Aslam Rahman (holding toddler) at a PMT Fun Run event.