Cape Town - A terminally ill girl from Joburg has done what many adults struggle to come to terms with: she has accepted her own mortality. When doctors told her she was “going to die”, the brave 6-year-old girl replied: “It’s fine.”
Chade van Niekerk spent most of her life in the children’s wards of hospitals in Joburg even before she was officially diagnosed with a rare digestive system disorder in 2014.
Her family could only afford tickets to Cape Town to seek further treatment at Red Cross Children’s Hospital through the charity of others who had heard of the family’s efforts to prolong the little girl’s life. They said doctors in Joburg had said “nothing more could be done” to help Chade before they were referred to the hospital in Cape Town.
The red-headed girl, who is a veteran of several major operations, suffers from hollow visceral myopathy. Her internal muscles no longer work to push the food through her body and absorb its nutrients. She is also anaemic.
Her grandmother, Fransien Diedericks, 49, said Chade’s development was two years behind and she was 8kg underweight for her age. The average weight for a girl her age is 25kg, but she weighs 17kg.
Her mother, Charlotte Diedericks, 26, said Chade is fed PediSure in the hope that her body will absorb some of its nutrients.
The talkative girl questioned why she could not attend primary school “like other children” who do not have stoma bags attached to their abdomens. Stoma bags are attached to an artificial opening made into a hollow organ for drainage purposes.
Dressed in a pink night dress and slippers decorated with characters from the animated film Frozen, Chade told the Cape Argus: “I can’t go to school. There are children like me in school but they don’t have a (stoma) bag.
“The doctor said I am going to die. I told him it is fine.”
Her mother said Chade loved school in the 17 days that she could attend her Grade 1 class. But after several major operations, which included the removal of a third of her colon, Chade could no longer attend school.
“They took her appendix and they attached it to her naval. Then we took a feeding tube and stuck it through her naval on a daily basis to clean out the stomach from the top. That only lasted for three months. Then they attached a stoma bag,” Charlotte said.
Fransien said she could not watch her “baby girl” starve to death after doctors in Joburg told them not to worry that Chade was “not feeding”.
When doctors would not insert a feeding tube, the family decided to make the trip to Cape Town. “For a year I have been begging: ‘just feed our child’,” Fransien said.
The family will have to remain in Cape Town for at least five weeks to hear the outcome of various tests. They have received support from Capetonians after Chade’s story was shared on KFM Breakfast with Ryan O’Connor. Some have offered food, others cars and a place for the family to stay while in the city.
“I am so grateful to the angels that helped us during our time of need. We want to be there for Chade and make it as comfortable for her as possible,” Charlotte said.
Fransien said that doctors were unable to say how long Chade could hold on, but the family was living “one day at a time”.
The Red Cross hospital said: “The patient is currently under the care of a specialist paediatric surgical team. Doctors are in the process of collating all results from previous investigations in Joburg and will formulate an investigation and/or management plan based on all the information when it becomes available. In the meantime, the patient is receiving appropriate nutrition in consultation with the dietetics department.”
Cape Argus