Hope for Indie: A Fight for Life

In November 2021, we lost our first child Nevaeh, who was stillborn at 40 weeks.

The next year was filled with highs and lows. The doctors couldn't find the cause and we persevered to have another child. In December 2022 we joyfully welcomed Indianna into our lives.

At just 10 months old she was diagnosed with a life-limiting and super rare genetic disorder. She is the first reported case in New Zealand and one of only about 100 worldwide.

Sadly, Indie has severe physical and intellectual disabilities and there is no cure. It's likely she will never see, smile, speak, or take her first steps. Her brain is small and underdeveloped, which causes seizures, massive developmental delays, and breathing and feeding difficulties. She has been in and out of hospital, on and off a feeding tube, had surgery, needs ongoing round-the-clock care, and oxygen support to breathe.

Despite all these challenges, Indie's bright, sparkling blue eyes have a magical way of bringing everyone around her joy and love.

Most babies with her condition do not survive their first year so it's remarkable she is still with us. But a recent hospital visit has confirmed the reality of just how fragile Indie's health is. Even a minor illness like a cold means up to two weeks in hospital. And in a worst-case scenario, it could be a one-way journey.

This new chapter in our family's story has led us to humbly ask for your help in giving Indie the best possible chance to stay healthy so she outlives expectations.