Raising awareness of sickle cell disease

by Courtney O'Brien
Warragul locals Garbi and Ada Irorere are parents of a child living with sickle cell disease and are working to create awareness and help other families impacted by the condition.

Sickle cell disease (SCD) is a genetic blood disorder where red blood cells are hard, sticky and shaped like a sickle.
The condition is passed on to children from parents who both carry the haemoglobin 'S' gene.
These sickle cells clump together and can get stuck in small blood vessels, blocking blood flow, which can cause pain and damage major organs.

Mr and Mrs Irorere's son is almost eight and regularly experiences sickle cell pain crisis.
"We have been to hospital this year, three times already," explained Mr Irorere.
"A crisis means that he will be in severe pain and it is uncontrollable. We've been doing this for over seven years. Running to hospital and sometimes he has been in the hospital for two weeks, five days, a week."

"Any time there is a crisis it affects us, emotionally, mentally, we just have to be strong to be there for him - especially when you see your children go through pain, you can't really help them and you feel hopeless."

After their son came out of hospital last October following a prolonged crisis, Mr Irorere decided they would help other, less fortunate families.
"We came back after 10 days and we looked around and (I thought) we're actually so lucky here in Australia and we have the privilege of having good health care, good support."
"There are people around the world that suffer sickle cell disease. They can't afford to pay medical bills."

In Nigeria, Mr Irorere's country of origin, more than 150,000 babies are born each year with the disease.
Many of these children die young as health care is expensive and there's little government assistance.
These children also face stigmatisation, neglect and even abandonment by families who can't pay their medical bills.

"Because this affects our child, we need to do this," Mr Irorere told his wife.
And the Aussie White Lion Foundation was born.

The aim of the foundation is to support children and families with SCD across the globe, raise awareness, empower through community and advocate for change.
"It's just a different ball game over there," explained Mr Irorere, after recently visiting an SCD centre in Nigeria.

"There were a lot of kids on the floor. They could not even give them pain relief because there is no funding and the government are so corrupt they don't care about the citizens."

Through the Aussie White Lion Foundation, the couple helped about 100 families through cash donations, so they could access medication and pay some of their hospital bills and they also donated food.

They are hoping to continue this important work with wider community support.
The Irorere's will be sharing their story at a sickle cell awareness event on Friday June 19, 12:30 pm at the Warragul Community House. Community members are welcome to attend.