HELP Riley into a new swivel Car Seat

Riley is a 9-year-old girl with a diagnosis of hypotonic quadriplegic cerebral palsy and TRIO syndrome (One of 3 known cases of TRIO syndrome),

resulting in a severe movement disorder and global developmental delay. Riley lives with her parents and younger

brother in their family home. Riley’s parents are her primary carers, juggling Riley’s high support needs with their full time work and care of Riley’s younger brother Huxley.

Riley’s disability impacts on all aspects of her daily life. She has very low muscle tone which reduces her ability to maintain an upright position when sitting. She is able to sit independently for short periods but fatigues quickly and without external trunk supports, she leans considerably to the side. Over recent years, due to her low core strength and assymetrical muscle tone, Riley has developed a severe scoliosis, trunk rotation and

rear rib humping, all resulting in significant deformity of her spine and compression of her internal organs. Riley

wears a custom back brace most hours of the day and night with time out of the brace for comfort and pressure

relief. It is anticipated that she will have spinal surgery for the insertion of rods in the next 12 months. Ideally, Riley would be able to travel in her wheelchair as her wheelchair provides her with the postural support she requires in order to be comfortable and safe. With this in mind, a request has been submitted to NDIS for vehicle modifications. This is currently being considered by NDIS and it is hoped that this request will be approved. While this will be extremely beneficial for Riley and her family and support many of her goals, the following challenges will remain, even when the requested vehicle modifications are funded. Unfortunately, the wait time for modifications to be completed is approximately 16+ months from the time of funding approval. During this time, Riley will not have access to a car seat that meets her needs around postural support and therefore her safety during travel will continue to be compromised. Her current car seat is not supportive so Riley is not safely positioned and due to the lack of support and pressure relief, she is only able to tolerate brief trips in the car. This is impacting on family outings and Riley’s ability to travel to appointments. The family live in the Hunter Valley so therapy and medical appointments often involve considerable travel distances, which cause Riley distress. The is also putting stress on both Emma and Luke's backs as it is become harder for them to transfer Riley to and from the car safely.

Riley is requiring a speacial Carseat that swivels - The carrot 3000 allows easier access for getting in and out of the car.