YOU CAN’T HELP OTHERS, IF YOU HAVEN’T HELPED YOURSELF
Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. Usually, males are more severely affected by this disorder than females. For 16-year-old Ra’eesah Karriem, this syndrome is not just a name but something that has rocked her family.
Born and raised in Bokmakierie in the Cape Flats, Ra’eesah was an only child until the age of eleven when her brother was born.
“My family life was pretty normal, my mother had a full time job and worked long hours, so my dad and I developed a close relationship because he worked night shifts. He would be the one who would take me and pick me up from school, cook supper and help me with my homework. My mom worked long hours in a factory, so she had little time to spend with me and when she was around she was distant.”
Ra’eesah’s home life was made easier by her dad who made up for the lack of attention she received from her mom. When her brother was born, life at home didn’t improve much, and a year later her parents got divorced.
“In the time before the divorce, things were tense, my brother would get sick often and soon my mom left her job to care for him. My brother was diagnosed with Fragile X syndrome, a genetic condition that affects individuals’ intellectual and physical development.”
After the divorce, Ra’eesah moved with her mom and brother to a wendy house* at the back of her maternal grandmother’s house.
“I wanted to stay with my dad, but I was told I had to stay with my mom, so I did. I lived with my mom for about four years and it was horrible; I felt no connection with her. I tried talking to my mom, but we would argue a lot – as a child I became angry.”
“Things got worse when my brother turned two, because he did not develop at the pace of other children and he needed a lot of help. Most of the responsibility fell on me; I needed to take care of my brother in-between school. I didn’t know what was going on with my mom as she would never talk to me, I suppose she was exhausted. Every time I arrived home she would be lying down on her bed watching television.”
“I had to change my brother’s nappy, feed him, and watch him all the time because he would just run away. It got so bad that the neighbours would find him walking in the road and they would bring him back home. Even though it was a lot of responsibility, my brother and I developed a close bond.”
Her brother’s condition also attracted unwanted attention in a community where she felt very out of place.
“I felt like an outsider, because my brother and I would be bullied by my cousins. They would always make fun of him, and I would defend him. I believed he was the same as us, except he developed differently. They would call me stupid, and say my brother was mad, because he had a very short temper and would throw tantrums. They would call him ugly and make fun of his ears.”
“At times, I just wanted to move out. I was stressed out from looking after my brother, my cousins bullying me and feeling unwanted by my mom. But in the end, I would always think about my brother – he gave me a new way of looking at the world and helped me to see everyone as equals.”
Due to her brother’s syndrome, Ra’eesah and her family would find it difficult to care for him. Sometimes, he would have really bad temper outbursts and he would go to Lentegeur Psychiatric Hospital and stay there for a few months.
“He was around six when his fits of anger escalated. He was sensitive to noise, so anything would set him off. I knew it was his condition that made him behave in this way. His eyes would always remind me of who he really was before he acted out. They would give him medication to calm his anger, but it would make him drowsy – like a sleep walker.”
Ra’eesah and her family would visit her brother often when he was in hospital.
“I remember visiting him one Sunday and when it was time for us to go, he thought he was going with us. He was sitting at the window and I could see by his facial expression that he was disappointed. It broke my heart seeing him like that.”
When Ra’eesah turned 12, her mom sent her and her brother to live with their dad.
“I don’t know what led to it, but my mom sent us to live with my dad when I was in Grade Five – my brother only stayed with us for a few months because he needed my mom as they had a closer bond. He wouldn’t eat, or communicate, so he went back home to my mom. I stayed with my dad for a year, but then moved back to my mom because she said that she missed me. I missed my brother and I hoped that things would be better. When I moved back with my mom things were the same as before – she didn’t spend much time with me and the full responsibility of caring for my brother was on my shoulders again.”
Her school work began taking a knock because of her home situation, so Ra’eesah says that she realised she had to take control of her life.
“I would tell my mom that I needed time to do my school work and that I wasn’t happy with the way things were at home. She never listened to me, so I decided to talk to a social worker at my school.”
” I was in Grade Six when I told the social worker that I was feeling mistreated at home. She asked me for details about what was happening. I told her that my school work was suffering and that my teachers had spoken to me about my grades. They called my parents and spoke to them about how I was feeling. She also asked me if living with my father was really what I wanted; and said that I needed to go where I was happiest. It was a difficult time mostly because I felt guilty about neglecting my brother. It took a few months until I moved back to live with my dad.”
The move made a dramatic difference in Ra’eesah’s life. She is currently one of the top performers at her school.
“I see my brother about once or twice a month; he is 12 now and attends Bel Porto school, a place that focuses on education for pupils with intellectual impairment. He has improved and is currently busy with speech therapy. He can speak words but not sentences yet. I am very proud of his achievements. I am also working on my relationship with my mom.”
Ra’eesah concludes by saying, “It does not matter how young you are, you need to take charge of your own life. You need to know what you want for your future and keep focused, irrespective of the situation your parents may put you in. You can’t help others, if you haven’t first helped yourself.”
Ra’eesah is a Leaders’ Quest participant
wendy house* – Wooden structure often used as alternative housing