We have been very fortunate to have 3 beautiful children. When our youngest, Bodie, was nearing 8 months old he started presenting with what we now know were infantile spasms. A few days and hospital transfers later he was clinically diagnosed with Tuberous Sclerosis Complex and we were given a whole new lens on life.

The toughest thing we have found about TSC is the unknown. It felt like the floor fell from beneath our feet when Bodie was first diagnosed. We still have a thousand questions that no one can answer because no two cases are the same. We know that Bodie will likely be medicated for life, we know that he will need life long monitoring and the rest is wait and see. We are just 5 months into our TSC journey having just celebrated Bodie’s first birthday and the only certainty we can hold is that we will do everything in our power to give Bodie every chance of being the best version of him.

Bodie is an inquisitive and bubbly one year old. He loves his food, his sisters & manages to charm almost anyone he meets. Bodie has started crawling around the house and is meeting his milestones in his time with the help of an amazing village and allied team that he is surrounded by. Just like many one year olds he still manages to keep us up all night cutting teeth and practising his new tricks, each and every one we are grateful for.

We are participating in TSA’s 40 years of service fundraiser because we have been so grateful to this organization. They caught us while we were free falling and continue to provide a safe and comforting space, filled with resources and networks that we know we will use while we navigate our way through the challenges the TSC presents.

We hope to raise $1,000 as part of the #40kfor40yearsTSCchallenge to help TSA celebrate 40 years, and to help make sure they’ll be around for the next 40 years. Any gift you could give would be very much appreciated and truly make a difference to families like ours. Just click here to donate.

Thank you so much, Meg and Scott xx

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How your donation helps
$50    allows us to answer a single support or information request

Our TSC Information Service provides free advice to those affected by TSC.  One call from a family about the importance of early diagnosis and intervention treatments and how to access them can change their child’s life.

$100    allows an individual with TSC or their carer to attend an information event

Our virtual and face to face events provide an opportunity for people affected by TSC to learn more about the disease and meet other people living with TSC. These connections can be life-changing and can help to reduce the sense of isolation.

$250    allows us to update one of our medical information pages

Our medical information pages are the only source of accurate TSC information tailored to the needs of TSC patients and their families in Australia. The significant achievements of TSC research mean that these information pages require regular revision.

Your donation today will help us continue to provide our trusted information and support services for free to everyone affected by TSC by:

  • Maintaining this website, the only online source of accurate and up to date TSC information in Australia
  • Publishing and printing our magazine Reach Out twice a year
  • Providing a TSC Nurse service offering telehealth phone and email support
  • Organising and hosting educational events online for everyone in Australia
  • Advocating for improved services and treatment for families affected by TSC
  • Ensuring TSC affected individuals have access to all the latest global research and advancements in TSC.

Our donors have enabled TSA to champion many life-changing projects in Australia including:

  • Publishing a picture book to help children understand TSC
  • Funding an Australian clinical trial into a new medicine for TSC skin tumours (angiofibromas)
  • Creating New Diagnosis Parachute Packs for families receiving a new diagnosis of TSC
  • Development of a SEALS Genetic Diagnostic Laboratory, the first laboratory in Australia to offer genetic testing for TSC
  • Launching the In Safe Hands Education Resources to help teachers and educators understand how TSC may affect how a child learns.
  • Advocating for mTOR inhibitor medicines for TSC added to the PBS (Australian Pharmaceutical Benefits Scheme).

To find out more about how your donations make a difference, click here to read our latest annual report.

The vast majority of your contributions go directly to providing these important services and research. Much of our work is done by volunteers, working in their homes. This keeps our costs low, and ensures your money goes directly to support people living with TSC. Your support, however big or small, is greatly appreciated.

Please donate now

Amount Raised

100% raised of $10,000.00 Goal
197 donation(s)

Bodie’s TSC Heroes

Sharon Fuller
Aaron Todd
Meg Boschetti
Sophie Truscott
Tayla Bevan
Christopher Gillam
Aaron Jolly
Sam Holden
Lisa Stevenson
Fiona Little
Helen Kincaid
Brad Canavan
Con Petropoulos
Tom Stach
Bobby Bennett
Amanda Furness
Tyronie Fernando
Michelle Giovas
Buildings and Property Division Monash University
Luke Forrest
Jessica Dwyer
Jessica Coles
Cate Lanham
Karen Freidin
Louise Dann
Sam McGarry
Bradley Williamson
Ruth Oliver
Maria Giannakopoulos
Samik Waiz
Jennifer Tyres
Alexis Kouts
Julia Crellin
Julia MacGibbon
Rajeev Suberamany
Karen Lee
Jayde Taylor
Kate Rollison
Brooke and Chris Lawry
Natasha Bucker
Laura Mattmann
K. Prince
Lorraine Kennedy
Shane Watkins
Rebecca Power
Andrea Kelly
Kennedy Soft
Mark Wilson
Lynda Norrish
Jess Wollaston
A. Fosterville
Fletcher Hutchison
Louise Allgood
Lys Trsek
Sabrina Martenstyn
Alex Ah-Mew
Jennifer Dordevic
Christina Taitt
Daniel Dowling
Jane Dancey
Neisha Roberts
Janika Keyt
Tanya Joy
Timothy Jeddou
Mark Wonnacott
Kerry Casey
Andrew Pendlebury
Rochelle Deed
Russell Holmesby
Clifton Boschetti
Glenn Richards
Andrew McLauchlan
Dani Armstrong
Lucy Martin
Amy Van Galen
Ciara Flynn
Gerardeane Cosgrave
Gemma Coley
Leanne Maisano
Ryan Fishlock
Liz Murphy
Kathryn Versluis
Emily Reuter
Kade Murphy
Tom Boschetti
The Joint Physiotherapy TJP
Carlyn Sykes
Nathan Dall
Adrian Boschetti
Bianca Peart
Allison Gosney
Elleni Papadopoulos
Ann Moorhouse
Pip Fowler
Vikki Gilchrist
Rebecca Cayzer
Elise Day
Dale Hynes
Joel Gebert
Susanne Carter
Kacey Hunt
Alexander Gow
Damien Boschetti
Kyle Rodwell
Ann Fisher
Michael Aitken
Tess Sweeney
Nicole Stooke
Lyn Hunt
Jayden Burns
Lisa Dale
Moss McCallum
Angela Brindley
Cory Brady
Rob Moriarty
Jenni and Terry Lawry
Marie Beers
Anne Grundy
Aaron Clough
Rachel Lawry
Joel Nankervis
Nicole Dawson
Dominique Aprea
Hannah Stevenson
Paul Magnifico
Belinda Van Dyke
Laura Boschetti
Ash Rayner
Miriam Wilson
Megan Doherty
Elley Borland
Kaz and John Grigg
Wendy Gillam
Michael Jeddou
Lucy Sweeney
Jenna Grundy
Elise Lakai
Matthew Flanagan
Patrick Nicholls
Tegan Vanderheiden
Ben Morrison
Ashley King
S. Daly
Josh Mackie
Lee Doherty
Hemanth Hari
Shannon Malone
Jackson Meredith
Kyle Swinden
Beck Hodgetts
Emma Boschetti
Mariah Deacon
Karen Kelly
Mark McCulloch
E. Balfour
Phillipa Cafiso
Adam Connell
Paul Fermanis
B. Ferreri
Roland Homes
Scott Warner
Rob Lambeth
Liam Dimattina
Hayley Smith-Cameron
Luke H
Fiona Holmesby
Joshua Keyt
James Ireson
Tania Hutchison
Tristan Green
Ash Fulton
Heather and Kevin Deane
Debra O’Kearney
Karyn Deane
Caroline Robertson
Martina Keady
Margy Lucas
Stephen Deane
Kim Aidone
Margaret Dawson
Trish Rich
Marisa McCague
Louise Doherty
Felicity Van Dyke
Sharon Taylor
Clare Boschetti
Janine Ashworth