Lani and Beau’s story
Christmas is meant to be a time of joy, where families and friends reconnect and reunite, and life is celebrated. Sadly, for many families who are grieving the death of a child or children, Christmas time can be overshadowed by grief, heartache and anxiety.
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.
In 2007, shortly after arriving at the hospital, Simone was rushed in for an emergency caesarean section.
Simone shared, “It was a normal pregnancy. It wasn’t until the day Lani was born that we knew something was wrong. After arriving at the hospital, it very quickly became a whirlwind. Once the monitors went on my tummy, people started calling for a doctor. Suddenly I was getting wheeled down the corridor for an emergency caesarean. I remember my doctor lifting Lani and holding the knot in her cord, which was the problem. She was taken away immediately. My doctor said, “It doesn’t look good.” I was in shock, and I couldn’t stop shaking.”
Her baby Lani was born with severe brain damage. Simone and her husband Rob were told the devastating news that Lani wouldn’t survive long.
“I remember getting to hold my baby for the first time when she was five days old,” says Simone. “It was the most painful cuddle because we knew she wasn’t going to make it… We weren’t going to bring her home.”
They couldn’t bring themselves to take Lani home — with the enormous responsibility of her medical care and the fear of losing her at any moment. 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 thiers. It meant Simone and Rob could be with Lani in a place where she was given the best quality of life and death — and they could focus on enjoying their precious but limited time with their baby. Lani sadly died after only 16 short days with her parents by her side.
Thanks to supporters like you, our expert team was there to provide all the specialist clinical and emotional support the family required in those precious moments.
A year later, Simone and Rob welcomed their beautiful son, Beau into the world. Bringing their baby home and watching him meet milestones that Lani never got to, was bittersweet. As the days and years went by, they watched their little boy grow and develop a personality of his own.
Beau fitted perfectly into Simone and Rob’s life and it was a joy to see him become a doting big brother to his baby sister Coco. Shortly after Beau started school, warning signs began to appear.
His behavioural abilities started to deteriorate, then he began to lose his physical abilities. An MRI confirmed Simone and Rob’s worst fears. Beau had a serious brain condition and there was no way to treat it.
Simone shared, “We were told there was no chance of treatment. The doctors’ words were, “Take him home and love him.” And that was pretty much all we could do. We were constantly worried about him.”
On Christmas morning, Coco ran down the stairs eager to see what Santa had brought – but she came on her own. Rob noticed that Beau didn’t come down the stairs with his little sister, like he normally did.
“I ran upstairs to tell Beau to look at what Santa had for him under the tree.” says Rob. “He was on the floor. He just couldn’t walk. I thought, oh no, this is happening a lot quicker than we’d thought.”
This is when Simone and Rob called on the support of Very Special Kids for a second time. 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 Coco to help her cope with losing her brother.
At Very Special Kids, we believe every child has the right to the best quality of life, no matter how long or short their life may be, and every family is comprehensively supported through their most difficult journey. 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.
Sadly, there are many more families just like Simone and Rob’s facing the most heart wrenching experiences. As Victoria’s only children’s hospice, we rely on the support of people like you, to ensure seriously ill children and their families don’t have to endure their difficult journey alone. We need your help to give families the most comprehensive support they desperately need, facing a Christmas without their little ones.
Categories: Family News, Fundraising News, Very Special Kids News