Cover Photo

Amazing Amelia's 15for15 page

Supporting Prader-Willi Syndrome Association of Victoria Incorporated

Prader-Willi Syndrome Association of Victoria Incorporated

2020 15 for 15 Challenge

Thanks for visiting the Crowdraiser page of Team Amazing Amelia. 

Imagine waking up in the morning and feeling hungry.  Not so hard, is it.  Now imagine still being hungry after breakfast, before lunch, after lunch, before dinner and before bed.  This is part of a typical day for many with Prader Willi Syndrome (PWS).

My name is Nick Burke and my daughter Amelia is a delightful 14-year-old young lady with Prader Willi Syndrome (PWS).  She is now in her second year at Rossbourne School in Hawthorn where she enjoys cooking, tech classes, basketball, maths, watching episodes of Behind the News and literacy. Out of school she enjoys yoga, playing the piano, painting, solving and designing puzzles, and knitting. She also enjoys watching her favourite YouTube videos of spy ninjas, the Skory’s, Rebecca Zamolo, that YouTube family and the Beach House; and playing her favourite games on her iPad. She has regular sessions with speech pathologists, occupational therapists and psychologists which benefit her greatly, but still struggles with skin picking, anxiety and emotional control.  

ABOUT PWS
PWS is a complex genetic disorder caused by a non-inherited defect in chromosome 15.  That is, it is indiscriminate towards sex, race and geography.  It occurs in around 1 in 15,000 births.  It is a multistage spectrum condition. In PWS, part of the brain called the hypothalamus is affected. The hypothalamus controls hunger, thirst, temperature regulation, pain and hormone production.

The condition can have a significant impact on behaviour, learning, mental and physical health, community inclusion and relationships. People with PWS can experience high anxiety, complex and challenging behaviours and cognitive dysfunction throughout their lives. Consequently, they have substantial, often bespoke support requirements.

THE 15for15 CHALLENGE
The 15for15 challenge recognises the difficulties those with PWS; their families; and carers face daily.  The challenge asks that for 15 days one makes a commitment in recognition of chromosome 15.  

So, from 17th May I will be challenging myself to:

  • Rack up 150,000 steps – ouch!
  • Be in bed before 11:15 at night – ouch!
  • Sit cross-legged for 15 minutes a day – ouch!
  • Not drink beer and making sure I drink at least 1.5 litres of water per day – ouch!

Amelia’s 12-year-old brother, Sean will be participating as well.  His challenges are: 

  • Eat fruit or vegetables every day
  • Not eat pepper crackers or shapes crackers
  • Style his hair differently to normal for the 15 days - see photo below

Anyone who knows us will know each of these will be testing.  Progress on all challenges will be posted regularly.

Our friend Ana María Posada Gómez has challenged Amelia’s team to reach the target and will make a 60cm sacrifice if we do. That is she will cut her hair (see photo below). Her love for children has inspired her to do this and the hair will be donated to children undergoing cancer treatment. A huge thanks to Ana for making this selfless commitment (photo below)

This year 15for15 is raising money for three causes:

  • to develop a much needed state-wide, evidence-based model of care for children with PWS.  This will be implemented at both the Monash and Royal Children’s hospitals and could eventually be rolled out nationally;
  • to support the services and activities of PWSA Victoria, such as our annual camp, social and educational events and helpline;
  • to raise awareness of PWS so that all with the condition may benefit.  To help with this there is a range of PWS merchandise available.

So please donate if you can and keep an eye out for updates on our challenges.  And why not challenge yourself for 15 days?  You too can share your progress on Amelia’s page!

Thanks in advance from Team Amazing Amelia.

DEDUCTIBLE GIFT RECIPIENT STATUS

DGR Reference Number: 900462951

Donors wishing to claim a deduction for gifts/donations $2 and over should make reference to the Prader-Willi Syndrome Association of Victoria Inc. and our DGR number (900462951) in their payment records.
Further information relating to Gifts and Fundraising can be accessed here

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Help to reach the goal of $5,000

$2,440 raised

Time left

Ends on 30/07/2020 at 5:00 PM

Donations Received

Logo Photo Mike and Helen Bryant
$102
Logo Photo Andrew Burke
$102
Logo Photo paul skavaas
$204
Logo Photo Mariela Rodriguez de Llanos
Con mucho cariƱo.
$100
Logo Photo Anonymous
$25
Logo Photo Ken Semmler
$256
Logo Photo Anonymous
$102
Logo Photo Fergal O'Donoghue
$102
Logo Photo Guillermo Obando
$102
Logo Photo Margaret Burke
$512
Logo Photo Bill and Libby Fone
$102
Logo Photo Fernanda Ausmus
$102
Logo Photo chloe burney
$51
Logo Photo B Fernandes
$10
Logo Photo Mai Pham
Amazing Amelia
$204
Logo Photo Michael Zammit
$51
Logo Photo Fiona Burke
Go team Burke!!
$102
Logo Photo Nicholas Burke
Go Amelia and go PWSA Vic
$204

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