Six-year-old living with Cystic Fibrosis still wants to be a rock star one day

Janco Koorts is suffering from Cystic Fibrosis (CF) and despite being just six years old, he remains positive come rain or shine.

According to the South African Cystic Fibrosis Association (SACFA), CF is a life-threatening disorder that can be inherited. SACFA further revealed that unfortunately, for the thousands of people suffering from this disorder, there currently is no cure. However, several treatments are available so that complications can be prevented and make the condition easier to live with.

However, Janco’s mother, Tanya revealed that treatment is expensive.

“We are raising funds to get the life-saving medication, known as Trixacar, from Argentina for our little warrior,” said Tanya.

She claims that Trixacar is a medication used to treat CF and that one box costs $3 200 which is more than R62 000. In total, an amount of R400 000 needs to be raised to allow Tanya to buy six boxes of Trixacar along with the travel costs to Argentina.

Janco had been diagnosed with CF before his second birthday. Tanya was born and raised in Randfontein but her journey started in the Northern Cape. She said that they were very lucky that a doctor at a hospital in Kimberly diagnosed Janco so early on. The cost of living with CF is also taking a toll; financially and emotionally.

For Janco, living with CF is hard as he must visit doctors regularly, drink plenty of medicine and use a nebuliser often.

“When I stay at the doctor they need to put a pipe down my throat to get the mucus out,” he said.

Tanya added, “Janco takes a lot of medication every day and includes pancreatic supplements such as Creon, multivitamins, antibiotics, mucus thinners, antibiotics to steam with bronchodilators, and anti-inflammatory drugs with two different nasal sprays. He also has to go through physio regularly.”

For Janco and his mom, their daily routine starts as early as 04:00. Janco then drinks his antibiotics and vitamins. He then uses the nebuliser three times in the morning. Afterward, Janco has physio so that the mucus can detach from his passageways. When nighttime arrives, Janco receives another two sets of nebulising and then another round of physio as well. Tanya continued that every time Janco ingests food, he needs to drink his Creon.

“CF deprives Janco of being a normal boy. He cannot play in the mud like other friends, he cannot play at a restaurant in the children’s area. He is not allowed to sit outside when we braai. Any smoke is very dangerous for him. As everyone lived during the Covid-19 pandemic, that is how Janco must live every day. No contact with other people, wear a mask everywhere and sanitise everything,” Janco’s mother said.

CF has caused Janco to miss a lot of fun events. He cannot attend children’s parties and he cannot take part in sports. His mother tells about how Janco could not go to career day, even though they planned this day for so long since Janco was undeniably excited.

Even though CF affects Janco’s daily life, he does not allow the condition to get him down. Janco dreams of becoming a farmer and a rock star. In August Janco was unable to attend career day at school since he had a doctor’s appointment. Even so, Janco dressed up anyway. With guitar in hand, Janco was ready to set the stage and show CF who was boss.

“CF affects everyone in the family. It breaks me as a mother to know that my child has a terminal illness. He has so many dreams for his future. Janco knows he has CF but he does not know how serious it is,” Tanya said.

“As a CF parent, you are so hard on yourself. If he grows a bacteria then you blame yourself – what could you have done to stop it? You did not do his steam and physio well enough. We chose to give him a normal life, but sending him to school every day is a dangerous risk.”

Tanya is on the board of SACFA and part of her role is to welcome newcomers with a gift in hand. She explains how bitterly sad it makes her to see children who have been diagnosed. She cries her heart out knowing that these children have received their “death sentence” and the parents are going to battle against this death every day. Her advice to other parents is to take each day as it comes.

“Cry if you want to cry. Be angry. Do not hide your feelings of hurt and fear. Talk to the Lord every day. He is your comforter. In the end, you cannot fight this battle without faith.”