She loves an adventure – Meet Teagan

Teagan is a joyful, energetic young tween.

Teagan has enjoyed her first year of high school. She loves socialising and will stop and chat with anyone with an animal that she can pet.

“I really like animals and dogs, so I really want to look after dogs. Start a day-care for them”

Teagan

He loves to play outside in his mud kitchen or cubby house. He also loves lego, imaginative play, dancing and singing. He is obsessed with nursery rhymes and fairytales and knows his favourite ones inside out…. So don’t mess with him and change the storyline or words!!

Teagan loves getting out and competing in little athletics, cross country and swimming. Her favourite activities are art and Lego. She also loves helping mum with cooking.

“I have low muscle tone and sometimes get bullied. It’s very hard in life. Sometimes I get picked on at school and taken advantage of”

Teagan

Important note: Teagan felt that it was important to talk about the challenges she faces with Prader-Willi Syndrome and in life as this is part of her story and she wanted to share this in her video so that others are aware – We are very proud of Teagan for owning her story and being so open

People with Prader-Willi Syndrome are kind, resilient, wonderful individuals, they have goals, dreams, and aspirations just like everyone else. Families strive to support their loved ones with Prader-Willi Syndrome and help them live their best life and this year want to bring awareness to others to ‘see their child as they see themselves – the whole person rather than just a person with a Prader-Willi Syndrome’.

In May, the 15 for 15 Challenge will raise awareness and funds for Prader-Willi Syndrome. Money raised will assist the Department of Paediatrics at Monash University to continue developing a desperately needed state-wide, evidence-based model of care for children with Prader-Willi Syndrome.

The project is led by Professor Katrina Williams of the Department of Paediatrics at Monash University in close consultation with Associate Professor Tom Connell from The Royal Children’s Hospital. Monash Partners Academic Health Science Centre, a partnership between leading health service, teaching and research organisations, will support the state-wide plan by working with all stakeholders, including children, families, carers and front-line clinicians, to identify and prioritise elements of best care. The elements that will be prioritised include specific interventions and supports, models of care, location of care and key principles of care.

The program is being developed for implementation at both major Victorian paediatric hospitals (Monash Children’s Hospital and The Royal Children’s Hospital with regional links.

The model will be designed for implementation across all Australian hospitals that care for children with Prader-Willi Syndrome.

Funds will also be directed to the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) to ensure the continuity and growth of the vital supports and services we provide to our community.

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Article By Renee Zilm

Renee excels in enhancing business operations by refining processes, ensuring organisations function with greater efficiency, effectiveness, and strategic insight. Beyond her professional expertise, Renee is a mother to four children. Her life took a poignant turn when her second youngest child was diagnosed with Prader-Willi Syndrome shortly after birth. Embracing this challenge with grace, Renee now dedicates her time to caring for her son while also committing herself wholeheartedly to her role as President of the Prader-Willi Syndrome Association of Victoria.

Ever since her son Harvey’s diagnosis, Renee has been a force of change, initiating and steering innovative programs and services designed to empower individuals with Prader-Willi Syndrome. Renee is deeply invested in the tenets of social justice and inclusion, driven by the conviction that individuals with disabilities deserve equitable access to support and resources necessary for a full and inclusive life. Her profound dedication to her work and her family reflects an overarching mission to ensure that every individual with disabilities can thrive in a supportive and inclusive society.