No Need to be Afraid
The death of a sibling is an experience that can change the lives of many people. For Gloria Mboma (15), it is not only the death of her siblings that has made her sad, but also knowing that she lives with the same condition that caused their death.
Born in Democratic Republic of Congo, Gloria and her family had a financially comfortable life. However, the family lived under the shadow of a genetic heredity disease.
“I don’t remember much about living in DRC, except that two of my siblings died when we lived there. My eldest sister passed away when she was six and my brother when he was two. All my siblings died due to complications caused by haemophilia.”
Haemophilia is a disorder that impairs the body's ability to make blood clots, a process needed to stop bleeding. This results in people bleeding longer after an injury, easy bruising, and an increased risk of bleeding inside joints or the brain.
For Gloria’s family the disorder has plagued their lives and caused many difficulties. “My dad and all four children carry the disorder, however the strain that my siblings died from was stronger than the strain the rest of the family has.”
Following the death of her siblings, Gloria says that her family tried to maintain a sense of normality for her and her brother until her sister was born.
“I was three when my sister was born, I remember being so excited about having a baby sister. I always wanted to be around her and play with her. I think I thought she was like one of my dolls.”
Unfortunately, Gloria’s sister was diagnosed with a severe strain of haemophilia shortly after she turned six months.
“I remember she would cry a lot, my parents wouldn’t know how to treat her at home so they would take her often to the hospital. My mom would go with her and my brother and I would stay with relatives because my dad was working. I would sometimes feel annoyed and angry when my mom would come home without my sister. My mom would come home, change and then go back to hospital. I often wished she could just stay with me, so we could bond.”
“My sister’s condition worsened, her doctor recommended that she be transferred to Red Cross Children’s Hospital in Cape Town.”
“My sister was three, my brother was nine and I was six when we moved. I don’t remember much about the move, except that my dad stayed behind to sort things out and all the siblings move to Cape Town with our mom.”
“We lived with my aunt, her husband and three kids in a house in Mowbray. Even though we were nine people in a three bedroom house, it never felt like we needed more space. It was good staying there, because it was home. My dad was in Congo and my mom was always away at the hospital, so having my aunt’s family around was a blessing.”
“My sister spent a lot of time in the hospital and she would come home occasionally. I never visited her in the hospital because my mom did not want us to see my sister in that state. It made me feel sad because I wanted to see her. She was my baby sister and even though I couldn’t play with her, I knew the visit would have made her happy and made her feel better.”
“The few times she came home, my brother and I would buy chips, watch cartoons and tell her stories. She would laugh with us and never complained about anything.”
The family lived in Mowbray for a year, until Gloria’s dad moved to Cape Town.
“When my dad came we got our own house. My dad took the role of caregiver and would stay at home with us.
He would also visit the hospital but my mom would be the one permanently there. She never stayed at home with us. I wanted her to be close to me as she was to my younger sister. I envied their relationship and wished we had a chance to develop one.”
Gloria says that with her father around they began visiting her sister in hospital.
“My sister never looked happy because she wanted to go home. But she didn’t look that good – she was very pale, so I could understand why she needed to stay. I didn’t like seeing her like that, she would have drips in her arm, and would always be in bed because she couldn’t walk. She lost her walking ability after an operation, so she could only move around through crawling or with the assistance of a wheelchair.”
One day Gloria’s sister was home from hospital when she suffered a terrible accident.
“When my sister was six, she was crawling and tried to pull herself up by a door handle. Without noticing it, my brother opened the door and she fell back bumping her head. She got a terrible headache and was taken to hospital where they told my parents she had a burst vein and needed an operation. Even though the operation saved her life, she lost her eyesight.”
Doctors advised that Gloria’s sister would be blind, however she became partially impaired. During the three years that followed Gloria’s sister’s health improved and she began going to a school for children with special needs. “She was doing well. It made me happy to see that she was free from the hospital although she remained on medication and would still go for physio therapy.”
Gloria says that this was the time she was able to bond with her sister, “I would take her to the toilet and feed her. It felt good to be able to do things with her.”
When Gloria’s sister turned nine she suddenly got sick.
“She began throwing up uncontrollably. She was rushed to hospital, and passed away. It was a real shock for us because we thought she was getting better. The doctor just said that something happened with her heart. All my dad said is that it has something to do with the ventricular walls – that they weren’t pumping enough blood.”
“I was 13 and it was difficult saying bye to my sister, it broke my heart. Even though I wanted her home with us I knew that she was probably in a better place.”
“The first year after her death was tough, but eventually we moved on. I spent a lot of time thinking about haemophilia and that I also have it. I wondered why it had affected us so differently. Throughout my life I hadn’t been to a hospital and I’m not on medication. Part of me felt guilty while the other part felt grateful.”
“I used my time researching ways people with diseases can be better treated and how their lives can be improved, I developed a passion for healthcare.”
Gloria is currently in Grade 11 and wants to volunteer at hospitals, “I have decided to focus on my school work because I want to become a doctor. Besides studying I am looking for volunteer opportunities in hospitals to learn and to help.”
In conclusion, Gloria says that living with the same condition that killed her sister has changed her perspective of life.
“I realised that death has always been around me and this awareness has created two personal life mottos. First, life is short so spend your time doing things you are passionate about and building meaningful relationships with your loved ones. Secondly, I believe death is not the end, but a stage in our journeys. I believe my siblings’ spirits are free somewhere like all of ours will be. So, no need to be afraid.”
Gloria is a Leaders’ Quest participant