Karel and Nandi Koster said their little boy Ingo was born at 27 weeks, weighing 935g, and was diagnosed with ventricular bleeding at three weeks old.
“This caused many challenges on a medical and financial perspective and we spent many months in the neonatal ICU,” Nandi said. She said things became worse as her son got older. “When Ingo turned three years old he started getting severe brain seizures, and this had a dramatic effect on his standard of living.
"By the age of five he was still unable to walk, talk or even swallow water or food.
“Yet again we spent time in the ICU almost every month as a result of this,” she said.
The family, from Pretoria East, said they realised there were other parents that went through the same ordeal with their children.
Nandi said most families often came to a point where doctors gave up hope or to a point where medical intervention was not possible as the process may result in irreversible brain surgery in most cases.
It was then that they took it upon themselves to start the organisation, which was formally registered early last year.
The aim is to assist parents financially and on many other levels to obtain the best medical and neurological protocol for their children, nationally and internationally.
“We personally have experienced the result of this protocol with our own son Ingo and believe in neuroplasticity and that the brain can form new brain paths to restore and heal itself,” she said. She said their now six-year-old son used to have 300 seizures per hour, but for the past 10 month he has only had four seizures which proved that the protocol was indeed working.
“You can imagine that from 300 seizures per hour to four in the last 10 months is great progress and the result is that Ingo is really doing well,” Nandi said.
So far, they have financially assisted two families and are very excited to be part of Ntutukhu Stimulation Centre in Soshanguve. The centre cares for 22 brain-injured children from the age of one to 12.
“Our objective is to help install a better therapy facility and apparatus at the centre, and also assist with medical and all other supplies,” she said.