She likes to play with her baby doll – feed her, and cuddle her. She also loves to give lots of cuddles to her family every day.

She shows a lot of empathy for others and can’t see anyone crying without hugging them and calming them down with her little cute hand.

“We will never tell her that we feel sorry for what you are going through and that we feel sorry for you, we will always tell her we love her and we are going all the way with you”.

Rabi (Dad)

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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post She is amazing and we are so proud of her – Meet Sara & Family appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post She loves an adventure – Meet Teagan appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

“He’s brought so much joy and love into our world and I think we’re all better people because of Zac”

Jody (Mum)

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!!

While many things are a challenge in Zac’s world, he has proven that with time and patience, no obstacle is too big.

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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post Dances to his own tune – Meet Zac appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

“Just enjoy it (the now), because if you’re worried about the future you don’t really worry about what’s happening now so just enjoy it and take it day by day”

Shannon (Dad)

Enola really loves playing with her big sister and is often laughing nonstop together. She loves to be read to and listen to music. Mum and Dad are so super proud of all the little milestones she is achieving.

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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post Just take it day by day – Meet Enola and Family appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Ben brings the sunshine, always singing and dancing, even at inappropriate times making everyone smile, you’ll often find him and his brother Harry dancing in the kitchen.

Ben’s imagination takes his family to new places every day and his love for his family makes them all feel so special, he gives the best hugs and Harry is Ben’s favourite person in the world.

Ben’s love for animals is amazing, he’s so gentle with them, even feeding the fish in our aquarium by hand, we always have to stop at petting zoos, and you’ll often see the family stopping on the side of the road to watch the kangaroos or by ponds and lakes to see fish, frogs and ducks.

Ben loves movie nights and game nights, trying to bring as much fun into their family’s journey as possible.

Despite all the meltdowns and uphill battles Benny is brave and faces the world with a smile ready to say hello to everyone.

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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 the 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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post Together is Better – Meet Ben appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

Harvey will say hello to anyone and everyone and makes friends easily.

When Harvey is older, he’d like to be a “doctor, because they helped me when I was a baby”.

“I just want him to be happy and have the same opportunities that our other kids have. I want him to dream big and want to be able to help him achieve everything he wants to achieve in life”

Renee (Mum)

Hyperphagia (constant hunger) is Harvey’s greatest daily challenge, but he manages to face the world every day with the biggest smile on his face and so much love in his heart.

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 the 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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post He has a kind heart, he’s happy and thriving – Meet Harvey appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

I have a full-time job that keeps me very busy and on my days off I love spending time at the movies or walking up to my local café for a coffee.

“My mum and my dad have looked after me for 39 years of my life. I love them both very much because I’m very dear and close to my mum and dad”

Tim Elson

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 the 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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post I’m Proud to be the person I am – Meet Tim appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

The world just needs to know that she’s herself, a beautiful, unique child that’s just full of love and full of joy and she just needs to be herself.

Sandy (Marly’s Mum)

Marley loves babies, toddlers, breakfast, lunch and dinner and bald heads!

She’s friendly and loves to chat with absolutely anyone. She asks the same weird and wonderful questions over and over again. When Marly grows up she wants to be an astronaut, teacher, builder, hairdresser, popcorn maker or just do “boring adult stuff”.

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 the 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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post A beautiful, unique child full of Love – Meet Marly appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

“Hulk is possibly my favourite superhero because he’s strong and I want to have the strength and the heart… I want to have those things”

Jamal

Jamal has been learning to swim since he was 3 yo and about 3 years ago started training with the Melbourne Southern Special Olympics Squad. He has competed in many Regional Special Olympic Meets and has won many ribbons. Jamal and his family will travel to Knox, Footscray, and even Echuca for these Meets.

Recently Jamal competed in the Victorian State Special Olympic Games where he won 2 Gold and 2 Silver medals which was a great achievement. He completed 25m Freestyle, 25m Backstroke, and 50m Backstroke and was a member of the 4x25m Freestyle Relay Team.

Jamal also enjoys playing Netball. He trains every Monday after school and competes in a Netball tournament once a term where his team plays against other All Abilities Teams. Jamal loves to play Centre but doesn’t really like running (haha!).

To build up his strength and balance Jamal attends physio twice a week. Jamal particularly loves boxing exercises.

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 the 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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post Brave, outrageous and adventurous – Meet Jamal appeared first on Prader-Willi Syndrome Association of Victoria, Australia.

“To overcome obstacles, I think about the number one person in my life… Me”

Amelia

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.

To learn more about Prader-Willi Syndrome

To learn more about the 15 for 15 Challenge

The post I am my own self – Meet Amelia appeared first on Prader-Willi Syndrome Association of Victoria, Australia.