Rock Radio raises funds for rare illnesses

There’s nothing harder in the world for a parent than when their hopes and dreams for a child’s future are crushed by an unexpected and life-altering illness rearing its ugly head.

The adjustment is nearly unimaginable, going from visualising your child playing rugby or netball, going to a school dance, and going to work one day as a healthy member of society to having to stay up for hours every night, making sure they don’t stop breathing.

This is what parents Marijke and Johan Fourie are going through right now. Their first child, Jano, was born quite normal, and they never expected anything bad to happen to him. However, when he was just four months old, Jano started experiencing very serious epileptic seizures.

Marijke said that Jano could have up to a hundred of these attacks per day.

“My little boy was in the ICU for seven months, where they placed him into comas so that his brain could relax, so that he wouldn’t sustain too much brain damage. Nevertheless, due to all the epileptic attacks, he suffered damage to the motor area of his brain. He can’t walk or talk, and is like a large baby,” she noted.

They wanted to try for another child, and Marijke later gave birth to a little girl the named Ava. On 7 December 2018, a week before she turned four months old, Ava also became sick for the first time.

“They could never tell us what was wrong with Jano, that’s why I wanted another child.” They never expected that this illness could affect their second child as well.

Both Jano and Ava are on about five different Schedule 5 medicines, which they need to take each day. They are also either confined to a hospital or to their home, which Marijke says now much resembles the inside of an hospital. They are on constant monitors, and someone needs to be permanently at home to look after them.

Because of this and many other aspects, the family’s medical bills are extremely high. A lot of the treatments aren’t covered by their health insurance, and must be paid for out of their own pockets. For this reason, they are actively trying to bring in funds from outside sources and, on Saturday, 1 May, they held a very successful fundraiser at Silverstar’s Barnyard Theatre, when the Rock Radio show kicked off two days before its official opening. The performers gave their all on stage, singing hit songs from the 80s, all the way up to the 21st century; songs from artists such as Whitney Houston, Toto, George Ezra, Ed Sheeran, Cher and Lady Gaga. Profits from the show, and the auction afterwards, went to paying off the large medical bills, and will help to give the children some much-needed therapy.

Marijke also noted that, when tests were conducted on Ava, doctors realised that she and her brother both have Rett Syndrome, autism and a form of epilepsy which cannot be treated by medicine. They also suffer from an intellectual mental disability. It’s very rare for a child to have all four of these illnesses, but even more rare that two children from the same parents have these diseases.

“The long and the short of it is, no one knows how long they will live. They may live a day, or they can live a year. Every day is an absolute blessing with them,” Marijke said.

If anyone wishes to contact the family, the best place to find them is on their Jano Fourie community page on Facebook.