Janco Koorts: ‘His lungs feel lighter’

Henry

Janco Koorts, the six-year-old boy from Pretoria who was diagnosed with cystic fibrosis (CF) at the age of two, started his first phase of treatment of almost R100 000 earlier this month and his family says they can already see a difference.

RNews reported earlier that a germ can mean a death sentence for the blond boy and unlike most other children, Janco must constantly guard against germs.

However, since his diagnosis, Janco’s parents, Jaco and Tanya Koorts, have thrown everything into the battle to obtain medication, which is only available elsewhere in the world, in an attempt to save Janco’s life.

This medicine, Trikafta, which Tanya describes as a “miracle drug”, is however very expensive and even the generic version, known as Trixacar, costs a fortune.

“It was first $3 900 (about R71 000 per box), on December 15 the price went up to $4 955 (about R90 000 per box), and on December 24 it went up to $5 010 per box,” says Tanya.

“Someone lent us a box of Trixacar so that we can get Janco’s health better before he dies. 1 then go next year. We spoke with Janco’s doctor and for financial reasons we decided to put Janco on the lowest, lowest dose of Trixacar, plus Klacid which extends the life of the pill in Janco’s system.

The lowest dose is one box of Trixacar used over a period of six months. The usual dose is one box per month.

“If the lowest dose doesn’t work, we have to buy more boxes of Trixacar, which is financially impossible for us,” says Tanya.

Janco was admitted to hospital in December where the doctors did blood tests, a lung function test and a sweat test. He received his first dose of Trixacar, after which he went home with his family to enjoy the rest of the festive season.

“It was very emotional. I cried so much and Janco couldn’t understand why I was so sad.

“But whether the lowest dose really works, we don’t know yet.

“We will only be able to say for sure if we have blood tests, lung function and a sweat test done again in January.”

Although the family is still not entirely sure whether the lowest dose really works, she says they did notice noticeable differences in their youngest son.

“Janco has always been busy, but now he has energy!

“Usually he will play and tire quickly. He still coughs, but the mucus that comes out is no longer so thick, it looks more normal and comes out more easily.

“And he doesn’t taste so salty anymore. We lick him often just to make sure,” she jokes.

Ethan Fourie, Janco’s eldest brother, told RNews that Janco no longer sleeps as much and that the little guy now has a lot more energy.

“It makes my heart feel warm,” he says.

Jonathan Fourie says the medicine has not only made Janco better but also his parents.

“There is hope and smiles again in our house.”

Duane Koorts, Janco’s sister, says he looks very well and that this gives her hope again.

Tanya tells that the complexion and the color of her child’s eyes are so beautiful to her now and that her mother’s heart swells with pride now that he is eating even more.

“I asked Janco how he felt and he said his lungs felt lighter.

“But yes, we will only know after the next tests whether the dose really works, 2024 will only start for us when we have the results of Janco’s tests.

“We still have the fear of what if this doesn’t work, we realize the reality of the situation,” says Tanya.

“Our Christmas present this year was Janco! He lives! He’s breathing!”

She says her biggest wish for the new year is that the court case against Vertex Pharmaceutical will be won and that every SF patient will have the opportunity to receive medication before more lives are lost.

She says the future is still very uncertain for their family.

“We don’t know how much the medication will cost by the time we have to buy again and how many boxes Janco will need if the lowest, lowest dose doesn’t work.

“We were lucky enough to raise enough money to be able to buy two boxes of Trixacar already. We bought immediately when it was $4,955,” says Tanya.

“We are going to return the box we borrowed, then we have one more box,” she says.

“However, this is something that Janco will have to drink forever to stay alive, so we will always have to raise money unless things change drastically for us.”

A crowdfunding campaign on BackaBuddy has meanwhile been set up for Janco to help his parents save his life.

“We are blessed by a network of people who regularly organize different fundraising projects; from selling bows, to cake sales, concerts and lucky draws.

“It was not easy for us to ask for help, but we do it for Janco. We are not yet ready to tell him that he is actually slowly dying,” says Tanya.