Drive Ivani's Dream

Help Give Ivani the Freedom She Deserves

Hi,

I’m a mum to two wonderful girls. My eldest, Ivani, is a bright and brave 5-year-old who recently started prep. Ivani was born with a rare genetic condition, congenital muscular dystrophy, which severely limits her ability to move. She can’t stand, walk, or even lift objects heavier than a spoon. She requires full-time care and is considered high health risk, but what makes her truly remarkable is her spirit—despite everything, she always manages to keep a smile on her face.

Living with LAMA2-related muscular dystrophy involves daily challenges due to severe muscle weakness and joint stiffness. Mobility is non existing, requiring wheelchairs or assistive devices. Simple tasks like dressing, eating, and moving may need help or adaptive tools. Fatigue is common, and respiratory issues can arise as breathing muscles weaken. Joint contractures and scoliosis further complicate movement, often causing discomfort. Dependence on caregivers for physical assistance is frequent, and social isolation or emotional struggles can occur due to these limitations. Physical therapy and assistive equipment are key in managing symptoms and maintaining quality of life.

Ivani relies on a power wheelchair for mobility, but without a modified vehicle to carry her chair, we are stuck at home. Ivani longs to go out and explore the world like any other child, but without a car with a ramp, it’s just not possible. Our dream is to give her the freedom to live a fuller life, where she can visit friends, go to the park, and join her family on outings, all from the comfort of her wheelchair.

Unfortunately, in Australia, there is no assistance available for families like ours to buy new vehicles for modification. Over the years, many of our friends and family have asked how they can help. Now, we need your support more than ever. We are in the process of purchasing a Kia Carnival, but it will need modifications to fit Ivani’s power wheelchair.

This car is more than just transportation—it’s a lifeline. It will give Ivani the independence she’s never had, allowing her to enjoy life in ways that have previously been out of reach. For our family, this means freedom and the chance to share countless moments together, beyond the walls of our home. With your help, we can make this dream a reality and give Ivani the chance to truly live.

Any contribution, no matter how big or small, will be a life-changing gift. Your generosity will have a lasting impact, giving Ivani the ability to enjoy the world around her for many years to come.

Thank you from the bottom of our hearts for considering helping our family. This gift will truly keep on giving.

To learn more about her condition and the research being done, you can read the following articles from the RCH Research Institute: