Johnson and Hussain are regulars at the RCH – diagnosed with an inherited blood disorder called Sickle Cell Disease.
According to the WHO (World Health Organisation) around 5% of the world’s population are sickle cell carriers.
The condition affects the haemoglobin in red blood cells, causing cells to turn sickle or banana shaped. These cells cause blockages in blood flow, leading to anaemia, pain, infections and other severe complications such as stroke and chest crises. It’s a life-long condition and may require regular blood transfusions or exchange transfusions to remove the sickle cells.
Hussain and Johnson shared their stories as part of World Sickle Cell Awareness Day, on Thursday 19 June.
Meet Hussain
At just nine months old, Hussain was airlifted to The Royal Children’s Hospital (RCH) after suffering painful complications from a condition his family were yet to fully understand – Sickle Cell Disease.
“My wife and I were very young and didn’t understand the implications, we had no idea how serious it was back then,” says dad Mohammed.
“The day we took Hussain in, it was a special day for Muslims, we were celebrating Eid and were planning on going to Melbourne Zoo.
“My mother was like, this child looks really, really sick. Being nine months old, Hussein wasn’t speaking, he was very lethargic and that was the start of all this.
“We learnt that Hussain had a sickle cell crisis, which was the worst possible case.”
A crisis is a painful complication of sickle cell disease, which occurs when the sickled red blood cell blocks blood vessels, preventing oxygen-rich blood from reaching important tissues and organs.
“We were told our child is dying. And you can imagine being young parents it was terrifying.”
The family discovered Hussain also has asthma, which triggered further sickle cell crises, as well as an SVT – supraventricular tachycardia – an irregular heartbeat. Adding respiratory and cardiology specialists to his already sizeable care team.
Now 16 years old, Hussain has spent most of his life in and out of hospital receiving blood transfusions.
“What makes me go through all this, is the support from my family, my mum and dad. Seeing what they’re going through helps me keep my hope up,” says Hussain.
During admissions, his friends and siblings make sure to visit and keep his spirits up.
“My little brother makes fun of me all the time but when I do get sick, he starts crying the most,” he laughs.
“I used to get the pain and not tell my parents about it, hoping it goes away. That is a very bad mistake, and you should definitely tell your parents. The sooner you get checked out, the better.”
“We would love to make people aware… It is extremely dangerous, and it can happen so fast without warning,” says Mohammed.
Despite a long road ahead, the family remain hopeful, advocating for greater awareness in the community.
Hussain looks forward to studying civil or mechanical engineering when he finishes school and spending more time with friends.
Meet Johnson
Johnson, a confident 12-year-old from Tanzania, was diagnosed with Sickle Cell Disease in 2020 when his mum Zawadi noticed something wasn’t right.
“He was crying, the whole-body panting, legs, tummy, joints and he had a fever which was repetitive.”
“I didn’t know about it before, the hospital told me that this is serious, and this is the name of the condition.
“The main treatment is the blood transfusion that he receives every month and has many medicines that he takes daily. Seven tablets every day.
“It’s very hard to see a little boy like him facing this. My role is as a mother is to keep encouraging him.”
With a strict regimen of treatment and medication, Johnson has learned to manage his condition.
“I don’t like taking medicine but if it makes me healthy then I’ll take them,” he said. To keep busy he likes to play Uno and tic-tac-toe with family and nurses.
Now in grade six, he likes playing dodgeball with his friends and watching soccer, a fan of Manchester United.”
“When it happens to your son or daughter,” Zawadi says, “you have to accept it as a life reality. You need to take the medicines and follow what the doctor says.”
“I hope that in the future; he will help other kids with this condition.”
This interview was conducted with support from Johnson’s Zawadi’s interpreter, Michel.
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Regular blood donations from Australia’s ethnically diverse community are crucial to help children with sickle cell disease. You can find out more about donating blood from Australian Red Cross Lifeblood.
Thank you to Hussain, Johnson and their wonderful families for sharing their stories.