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Our first grandson Levi was born on 23 January 2023 with a Congenital Heart Defect. Levi has singular ventricle complex - a unique condition that only effects 0.005% of babies. Where a normal heart has 4 chambers that separate oxygenated and unoxygenated blood, Levi’s unique heart only has 1 chamber. In this chamber, oxygenated and unoxygenated blood freely mixes and travels between his body and his lungs, putting pressure on his lungs and not fully saturating his body with oxygen. His condition cannot be fixed, it can only be treated over several years through various invasive open-heart surgeries.

Duan and Cayley were initially presented with three options when they found out about Levi’s condition. Option one was to terminate Cayley’s pregnancy and remove all chances Levi had at life. Option two was to perform the open-heart surgeries. The first of which would have to take place within the first weeks of Levi’s life. A second open-heart surgery after 4-6 months, and the third operation when he’s about 3-4 years old. The third option they were given would be not to do the surgeries and to give Levi hospice care after he was born. 30 years ago, a baby with Levi’s condition only had a 15% chance of survival. Today, due to advancements in modern medicine, children like Levi have an 85% chance to live a “normal” life.

They decided that if they could get 1 second, 1 minute, 1 hour, 1 day, 1 week, or 1 year with Levi, it would be worth it. They decided to choose option two and proceed with planning out Levi’s medical care.

They had to dramatically adapt their lifestyle and living conditions to care for Levi. Duan had to stop working in the live events industry and transition to a career that keeps him home to help Cayley and to be there for Levi in case of an emergency. This shift in careers has left him with a major income deficit in the short term. Cayley likewise had to stop working as caring for a child with this condition requires her attention full-time.

Without the right Medical aid coverage, they would have to come up with more than R3 million (ZAR) for the medical treatments needed for Levi. The costs are already more than R1.3 million after first operation. Their only option was a medical aid membership that fully covers Levi’s medical care, which amounts to about R10,500 (+- $600) per month. Their previous medical aid wouldn’t have covered Levi’s specific condition. This puts a heavy financial burden on them.

Our funding target is R240,000 / $13,000 in total for next 12 months. Our family’s savings are rapidly depleting and urgently need to raise money to help Duan and Cayley cover Levi’s medical journey this year and to help make up the gap in their income in the short term while Duan focusses on furthering his new career. This equates to R20,000 ($1,100) per month which is the amount Duan now needs additionally to give Cayley and Levi the care they need, while Levi will be in and out of the hospital. Levi’s first open-heart surgery at 2 weeks old was a great success with the next operation in 4 month time.

This fundraising is a small way for me to help my son, daughter-in-law and first grandson Levi. My first son Ario was born premature, I know what it feels like to be stuck at an office when your wife and son needs you most. This fundraising is a way for me to help Duan to spend his time focussing on enjoying his boy’s new lease on life instead of worrying about not being able to pay bills, stay focussed on his family without needing to be away from home, as there is a real possibility that Levi might have to be rushed to hospital at a moment’s notice.

I will manage the funds on behalf of my son

I am a husband to an incredible wife, father to my own a prem-baby, father to a faithful son and grandfather of a miracle.

We would appreciate any donations - no matter how small 

Dirk Brouwer.

 

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