The colours in Nandi’s portrait are intentionally more muted and the mood of the photo is one of tenderness. Nandi finds enormous release from rock climbing and her gloves, sprayed gold, feature prominently in the image for good reason. Instead of climbing powder - gold glitter was used to dramatic effect, giving Nandi’simage an ethereal and almost magical feel. More than just about rock climbing – Nandi’s hands are healing hands for they nurtured, held, loved and nursed her baby boy to life and ultimately through hours of therapy to full strength. Nandi’s upward glance and the serenity of her gaze speaks to her Christian faith – for she has relied on her creator to carry her through long days and dark nights.
“My set back is a set up for a comeback, and once you choose hope, anything is possible.”
Nandi Koster is a Pretoria resident – married to Karel and mother to Ingo Luken – a young boy of seven who was born at 27 weeks and spent the first 89 days of his life in ICU. He had to be resuscitated many, many times – sometimes 15 to 20 times a day – but defied all the odds so badly stacked against him. Ingo earned the name Lion Heart in ICU – he weighed just 903 grams at birth.
They were married for nine years before they had Ingo and Nandi’s pregnancy was fraught with difficulty andshe spent the better part of her first two trimesters in hospital. When Ingo was born he suffered Intraventricular bleeding on the left and right sides of the brain and had bradycardia and apnoea (his lungs didn’t develop andhe struggled to breathe). The first year of Ingo’s life was spent in hospital every month sometimes for 7 to 14 days at a time. This was in and of itself – an incredibly hard time. They had dreamed of a perfect child and imagined it all to be so different; but it was not to be and their dreams were shattered.
Between the ages of two-and-a-half to three-and-a-half Ingo, while behind developmentally, did really well but it was then that the impact of his brain injury became evident. At three-and-a-half another storm settled with the onset of severe brain seizures - atonic and tonic-clonic brain seizures. This rocked their world yet again and Ingo went from a normal, active little boy, running around, engaging and interacting, to being unable to walk orspeak anymore. He wasn’t even able to swallow and had to be fed with a syringe. Life became a series ofEEG, CT Scans, MRI, FMRI scans, medical visits, and regular trips to the emergency rooms, neurological specialists, and neuroscience hospitals.
Medical bills soared and the family almost had to sell their home to keep up with the bills – moving in withNandi’s parents for support. But as parents they would have done anything for their child and the restoration of his health and his life.
The process was heartbreaking and life was hard and it was at this point that Nandi had her first of two nervous breakdowns and landed up in hospital.
At that point Ingo was on four different seizure, anti-epileptic and convulsion medications. He was given his first dose at 8h30 in the morning followed by two good hours and then he would be lethargic for most of the day. He would awaken at three in the afternoon and that became his life which was heartbreaking to watch. His seizures continued sometimes for an hour at a time. He had to wear protective head gear and today has many“battle” scars from his seizures.
The seizures changed our lives and our family says Nandi - we were constantly fighting for survival; we had three minutes to get to a hospital when a seizure took hold because Ingo would stop breathing. The stress on the couple and extended family and friends was immeasurable and they realised they had to do something different.
Nandi’s full name is Wilhelmina which means protection and that’s what she did for her baby. She loved andprotected him the only way she knew how – by calling for intercession, prayer and God’s sustaining love and healing.
The medication was so strong the couple discontinued the regime and instead sought help from a Neuroplasticity facility in the US where the protocol is based on frequency intensity and duration and a belief that the brain can find a new path that works around the brain injury. The process gets that brain to a point where it can stabilise and rewire itself.
During this trip Nandi and Karel were taught to become Ingo’s physical therapist and when they returned thehard work really began with a routine of therapy for six hours a day – seven days a week.
Despite all the hardship the couple remained faithful and chose to have fighting spirits and to be brave and strong so they could triumph over pain - always maintaining perspective. Nandi always believed there were other stories far more painful happening around her in the ICU with some mothers never able to take their baby home (from the ICU).
Nandi says this type of experience builds character; you learn who you are, and learn to prioritise and to stand up for the right things. As a result this incredible couple decided to pay it forward and help other children like Ingo - who today is a well-adjusted and a happy little boy. They began an NPO A Beautiful Mind which fundraises through silent art auctions to help children receive the same medical care with a more holistic approach that will better the lives of special needs children and families.
Despite such an incredibly tough story – the couple would not change it if it means they can help just one other child and family. They also counsel couples – knowing firsthand how this stress can rip marriages and familiesapart. Stats indicate that when there’s a family with a brain injured child – 75% to 85% of marriages breakdown.
Despite an abundance mentality and an overload of positivity – Nandi admits that she had the help of four different anti-depressants and there were times she wanted to give up. The burden was just so great and her strength was tested. But she says that something shifts in your spirit when you fight for a child’s life, and that makes things possible and you realise if you don’t stand up and fight, your child can’t fight with you.
Nandi’s advice to others on a similar journey – is never give up hope and surround yourself with people whocan sustain you. We are in awe of Ingo’s progress. While in a special need’s school he is able to run aroundlike any other seven year old and continues to make huge progress; he has been seizure free for 19 months.