Matty J IV With Lee Stewart - Kelsie CDG Superhero.WAV

Kelsie Stewart - CDG Superhero is a 7yo born and raised in Broome. She is a bubbly, social child who enjoys the typical activities you would see in children of this age such as going to the beach, riding her bike, playing outside in the mud, playing with her friends. At 13months she was diagnosed with a rare genetic confition, Congenital Disorder of Glycosylation(CDG1A). This means that Kelsies bodily functions are impacted significantly and that Kelsie requires substantial modifications and assistance to partake in any activity. For example, Kelsies primary form of movement is crawling when she is not in her walker or wheelchair, and requires assistance to stand,walk and/or ‘run’. Kelsie require adult assistance to engage in meaningful and two-way communications. Kelsie is unable to complete all daily tasks independently including toileting,feeding and independent movements in her community and home. To ensure the impacts of Kelsies emotional and mental well-being are minimised we invest time into maintaining relationships with therapist and schools rather than friendship circles. We invest in reading research rather than romantic novels. We provide the supports so that Kelsie can partake in everyday activities which are ‘normal’ without feeling like she is ‘different’. Because she is very different. She has a disability. So for us, finding the right team to support her is critical. And that includes the Saba Rose Button Foundation, who has provided equipment and supports for Kelsie to reach her current capacities. Without it their support she wouldn’t be weight bearing, have significant speech delays and be at increased risk of being completely isolated from her community. This year, on SATURDAY 13 MAY we are holding a fundraiser. Raising money for Kelsie Stewart and the Saba Rose Button Foundation. And we’d love you to come , share and support us in our cause so close to our hearts. Support your local CDG Hero