Most new mothers, upon delivery, expect to hold their baby in their arms while lovingly gazing down at their little one, anticipating the joy of taking their healthy infant home. But what if the exact opposite happens?
Such was the case with first-time Laudium parents, Fadil Ally and Sumaya Gani.
Their daughter, Amaani (7), was born in 2010 and was in distress at birth, which caused injury to her brain. She was then diagnosed with Spastic Quadriplegia, a form of Cerebral Palsy that affected her ability to use her legs, arms and body. Spastic Quadriplegia can be caused by damage to the brain before, during or after birth. Baby Amaani spent nearly 3 months in the hospital's Neonatal Intensive Care Unit, where she could not be held by her mother for days.
Given that March is Intellectual Disability Awareness Month, the Laudium Sun highlighted the stories of families with special needs in our community, especially since residents living with disabilities in Laudium, often feel forgotten or left out. Fadil and Sumaya are set on creating more awareness in the community, so that children with special needs, including their daughter, can feel free to be themselves, without having to deal with the harsh rejection from those who do not understand their condition.
“I often find people staring,” Sumaya said. “It can be a bit much sometimes. I wish they'd come say hello instead.”
Another common problem Sumaya raised was the cost of treatment for children with special needs and how difficult it often is for parents in the community to find the funds to make their children's lives easier. Her daughter's equipment ranges between R20 000 – R40 000 depending on the type and one specialist appointment can cost up to R2000. “There are so many possibilities to make these children's lives better, but it's too costly. I see a lot of children with special needs struggle, because their parents don't have the means to pay for high-priced equipment and treatment,” Sumaya said.
This is part of the reason why Sumaya plans to open a special needs centre, for the community. Sumaya shared a message of encouragement to families who just found out their child has special needs: “It might seem like an uphill struggle now, but when you reach the top, the view is beautiful. Don't give up and if you feel hopeless one day, take a break and try again. Children with special needs thrive on our love. The community should come together and advocate for these children. We need to be their voices, supporters and defenders,” a very optimistic Sumaya concluded.
Residents wishing to assist in this project may contact Sumaya on: 076 817 9196.
Amaani with her mom, Sumaya Gani and dad, Fadil Ally.
Amaani Ally (7) at her home, eagerly offering the camera her best smile yet.