Lani and Beau's story

Simone and Rob have endured more heartache than any parent ever should — welcoming four children into the world and, tragically, losing two of these precious lives, baby Lani and their ten-year-old son Beau.  

Lani was born with severe brain damage, and Simone and her husband Rob were told the devastating news that she wouldn’t survive long. This was the first time Simone and Rob came to Very Special Kids for support.  

Thanks to generous donations from our supporters, Simone and Rob were able to stay in our dedicated family accommodation for parents in situations just like theirs. It meant they could be with Lani in a place where she was given the best quality of life — and they could focus on enjoying their precious but limited time with their baby. Lani sadly died after 16 short days with her parents.  

A year later, their son Beau was born. Bringing their baby home and watching him meet milestones that Lani never got to, was bittersweet. But they loved watching their little boy grow. 

Shortly after Beau started school, his behavioural abilities started to deteriorate. An MRI confirmed Simone and Rob’s worst fears. Beau had a serious brain condition and there was no way to treat it. 

This is when Simone and Rob called on the support of Very Special Kids for a second time. “Everyone at Very Special Kids was constantly thinking of our family and offering us relief…always there to help me manage my anxieties. And I’m so grateful because I needed it.” 

With the help of our empathetic and dedicated supporters, we could provide their family with the practical and emotional support they needed during their darkest times. Everything from one-on-one counselling for each parent, to sibling support for Beau’s little sister, Coco, to help her cope with losing her brother. We were there with each family member right up until Beau died, at the young age of 10 years old. Then, continued to support them through their grieving.