‘You fight today, just for another day for your child to breathe’ – mom opens up about battle to get life-saving meds for 3-year-old

Janco Koorts was diagnosed with Cystic Fibrosis (CF) at the age of 2.

Mayo Clinic describes CF as an inherited disorder that causes severe damage to the lungs, digestive system and other organs in the body. “Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with CF, a defective gene causes the secretions to become sticky and thick. Instead of acting as lubricants, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.”

Janco’s parents and many others around the world have joined the Vertex Save Us Global Campaign in an attempt to get pharmaceutical company Vertex to make their life-saving CF drug, Trikafta and Kalydeco accessible to countries who don’t have it, but also at an affordable price. Currently these drugs are not available in South Africa and should you be able to get your hands on it, it will cost you around R4 794 981,25 per year.

ALSO SEE: Parents worldwide beg pharmaceutical company to make their life saving drug available to everyone

Janco’s mom, Tanya Koorts says they moved to Georgia in Europe in Jan 2019. “Janco was fine when we got there. He has always had a cough and a bad chest. We used to think that it’s normal because he’s still a baby and babies get sick.”

She says they were living in Georgia for about 3 or 4 months when Janco started losing weight. “He ate a lot, but after every meal his stomach would be really swollen. That’s when we realised something wasn’t right. His skin tone also started turning a greyish colour.”

Tanya and her family then had to make the decision to come back to South Africa. “No one over there knew what was going on with him or what to look out for. I didn’t even know what CF was until my son was diagnosed.”

Tanya and her family in Georgia before they had to come back to South Africa

Back in South Africa, they went to De Aar to stay with family. There a doctor told them that Janco had pneumonia. “He told us to take Janco to the hospital in Bloemfontein, but we couldn’t afford to take him because we didn’t have medical aid. So, he suggested that I take care of Janco at home and he will then just come and pop in every now and again to make sure that he is okay.”

ALSO SEE: How to spot the signs of cystic fibrosis in your child

Janco got better, but then a week later, he got very sick again.

“He also kept on losing weight but we couldn’t understand why because he was eating. Dr Burger then told us that we needed to take him to Kimberley hospital to test him for Cystic Fibrosis. At the time we thought, no it couldn’t possible – no one in our family has it.”

Janco unfortunately tested positive for CF.  He has the more serious CF gene (the delta F508 mutation). “He has really bad lung damage and his pancreas is not working at all,” Tanya says.

Janco and his dad in hospital

Janco’s life expectancy

“No one can really tell us how long Janco will live. When he was first diagnosed with CF, I did some research and all I could see on Google was people dying. Both my husband and I lost our mothers to cancer. I told my husband that if it’s Janco’s time to go we must bury him with my husband’s mom. The doctors can’t really give us an indication of how long Janco will live. It can be anything – it can be next year – nobody can really tell us. I see the latest stats say that most kids diagnosed with CF reach the age of 35,” Tanya says.

Life for a child with CF is really no life at all

Tanya says they always have to look out for germs. “He can’t do basic stuff that children do like playing in the mud for instance. Mud harbours bacteria that’s really harmful for Janco. He can’t really go to school because he can get infected. He can’t go and play in water like other kids and it’s sad. It’s something that I need to deal with and explain to him as well. He sees children and he just wants to go and play with them and I can’t let him go. It’s horrible. In this week I actually let him play with some mud and I felt so sick afterwards. I thought what if my son got bacteria in his lungs now, what if he’s not going to make it tomorrow. Janco just wants to laugh and play – he doesn’t know he has CF or even what it is. He doesn’t know that one of these days his longs will be full of mucous.”

ALSO SEE: 3 tips to explain a difficult situation to your toddler

Janco’s meds

Tanya says they have to go to the clinic at Charlotte Maxeke hospital every second month for Janco’s follow up and to get his medicine. “The problem now is that the CF clinics for people who can’t afford medical aid, like us, are starting to close. The adult clinic at Charlotte Maxeke hospital has already closed because there are no funds due to COVID-19 and the lockdown.”

Tanya says Janco’s medicine for his pancreas is very expensive. “A bottle of 100 pills cost R2 000. The stuff that he needs to nebulize with is also very expensive as is the machine he needs to use – that costs R4 000.” She says the state hospitals don’t have these medications which means they often have to buy it. He is also on antibiotics permanently that’s also really expensive as is the milk he needs to drink.

What the Vertex meds would mean for Janco

“If we can get hold of trikafta or even Kalydeco, my son can have a normal life. He can have a life like any other child and he can go to school. There’s a lot riding on that medication and I don’t think that Vertex realizes that,” Tanya says.

Janco with his mobilizer

“You feel worthless because there’s something that can help your child but you’re not allowed to get it. It breaks you every day. Every day you wake up and every day it’s a battle,” Tanya says.

She says sometimes it does get better. “What I’ve learned about CF is, you fight today, just for another day for your child to breathe. You go to bed thinking – did I do enough today, did he do his exercises correct, did I do the physio correct. You struggle to sleep – you feel nauseas and sick and the next day you wake up and it’s the same thing, but it does get easier. I firmly believe that we will get that medicine, that Vertex will help us. There are a lot of moms praying, my family is praying.”

Tanya and Janco

“I know that God has already decided on the specific date when Janco will get his angel wings, but I think when that day comes, I’m going to feel like ‘did I do enough, was it my fault?’ It’s difficult. All you can do is just hold on to your faith,” she says.

Watch Janco’s plea to Vertex below:

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