My name is Nada. I live in Sydney, Australia with my five daughters. My daughter Sara was diagnosed with Metachromatic Leukodystrophy when she was 3 years. She is now 18 and will turn 19 years old in February 2026.

Metachromic Leukodystrophy is a degenerative condition affecting all areas of the nervous system, sensory, cognitive and muscular systems. Sara is fully dependent on her Mother and carers for all personal care and activities of daily living. Sara requires a wheelchair at all times when not resting on her bed or on the couch. Positioning Sara in and out of her customised wheelchair requires use of a hoist when possible.

Sara is a growing girl and her needs for appropriate positioning and comfortable seeting arrangements are continually changing. Sara has significant scoliosis which has required corrective hip surgery in the past. At this moment, Sara has outgrown her current wheelchair and is due for a replacement wheelchair.

Many years ago we purchased a second-hand wheelchair accessible vehicle to allow us to transport Sara. The vehicle is a 2005 Japanese import and is reaching 20 years of age. A recent Occupational Therapy report from our NDIS provider noted that the vehicle does not meet the Australian standards for Sara's current wheelchair let alone her new wheelchair and is unlikely to be further modified to meet the requirements. Regardless, NDIS will not finance works on older vehicles like this.

A safe and reliable wheelchair is important for Sara to be able to attend appointments and family outings. We are hoping to raise enough funding to finance the purchase of a new van. The NDIS provider will then be able to support modification of the vehicle to suit Sara's requirements.

Every donation whether big or small is truly appreciated!

Much love

Nada, Sara and Family