A grandmother from Sunward Park, Santie Botha, is devastated after receiving the news that her seven-year-old grandson’s rare kidney disease returned after his successful kidney transplant earlier this year.

At just 22 months old, Conor van Baalen became extremely ill and after two months of medical tests he went for a kidney biopsy when he was 24 months old. Conor was later diagnosed with focal segmental glomerular sclerosis (FSGS), a rare kidney disease which is often difficult to treat, affecting each patient differently.

FSGS is not a single disease but rather a pattern of kidney damage and is one of the most common causes of nephrotic syndrome, especially in children and adolescents. Conor’s nephrologist tried several treatments and by the end of 2017, doctors confirmed that Conor’s FSGS was steroid resistant.

The only thing that could help Conor was a kidney transplant. His parents, Hennie and Santie, instantly began the quest to find a kidney for Conor. About a year later, Danie de Wet overheard Hennie informing people how urgently Conor is in need of a kidney. Knowing the family through wrestling, with the van Baalen family belonging to the Boksburg Wrestling Club in East Gauteng, Danie approached Hennie and was determined to donate his kidney to the youngster.

“Words cannot express how grateful we are that Danie was willing to donate his kidney to Conor. We know he had to make sacrifices for the operation to take place and it truly means the world to us.

“Conor is doing well at the moment thanks to the kidney transplant. His stomach is still a little bit swollen, but he is much healthier and more energetic. It also helps a lot that he doesn’t need to get dialysis for 12 hours a day anymore. However, he still needs to take medication and go for regular blood tests,”Conor’s grandmother explained.

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Even though the operation was a success, the family recently found out the FSGS has, unfortunately, returned and Conor will receive further treatment.

“This means we’re basically back to square one. The disease is going to attack his kidneys, which could lead to kidney failure in the future. The prognosis is concerning and the way forward is a bit uncertain. A kidney biopsy will now determine if the new kidneys are damaged already,” Santie added.

She highlighted that the lockdown was difficult for her as she was unable to see her grandson while self-isolating.

“It was dreadful not to be able to see him for two months, especially because I’m used to assisting him with his dialysis at our house on Thursdays. His grandfather and I regularly video called him, but it’s just not the same,” Conor’s grandma explained.

According to his mother, the boy is doing well during the lockdown as he is used to staying at home.

“Conor’s state of mind was good during the lockdown and he enjoyed spending time with his family. He is also doing schoolwork from Laerskool Elspark where his twin brother, Kody, is attending school,” his mother said.

She expressed her gratitude towards the community of Boksburg for supporting the boy during this time.

“Conor might be from Brakpan, but he’s certainly not a stranger to Boksburg as we received incredible support from the community. We’re extremely thankful for everybody who assisted us financially or supported us during this time. We realise the lockdown affected everybody, and we truly appreciate every contribution,” Conor’s mother said.

The concerned mother pointed out they are still in need of funds to help with the cost of the transplant and Conor’s treatment. The family’s medical aid only covered about 39 per cent of the procedure, which costs approximately R600 000. Anybody willing to assist the family may contact Santie (grandmother) on 082 959 0753 or visit his Facebook page (https://web.facebook.com/hopeforconor/?_rdc=1&_rdr).

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