Parent / Carer / Peer Support

The main aim of our telephone-based support line is to provide a network of volunteers with life experience in dealing with issues regarding Fragile X Syndrome.

While providing access to non-medical peer support, we also hope to promote awareness and a better understanding of Fragile X Syndrome across Australia.

We are also striving to compile or provide you with links to valuable resources that can assist with various issues and challenges. You will find one such useful document at the bottom of this page for 'Helping Employers Work with FX People".

The volunteers will include committee members and other people involved with the Fragile X Association of Australia, all of which have had varying degrees of experience with Fragile X Syndrome. Our hope is to reassure people dealing with Fragile X affected people that there are other people who understand and appreciate their situation.

Our group of volunteers are:

ASSOCIATION MEMBER	FRAGILE X CHILD/ADULT	OTHER CHILDREN
Nicola and Rick	Daughter 8 Sister 32 Brother 30	Daughter 4 Daughter & Son Twin newborns
Robyn	Son 34 Daughter 36 (carrier)	Daughter 32
Doug and Jane	Son 20 Son 17
Mary	Son 9	Son 12
Leonie	Grandson 14	Granddaughter 7
Hazel	Daughter 14 Son 12	Son 8
Cynthia	Daughter 15 (carrier) Son 12	Daughter 12
Christine and John	Daughter 23 Son 18	Son 25
Penny and Bruce	Daughter 20 Daughter 21 Older cousin in UK

The support line number is 0409 987 012. One of our committee members will answer or return your call if you leave a message. Please use this resource as every one of us likes a chat and we are always keen to talk about Fragile X.

Testimonial from a recent caller to the Parent Support Line:

Through contacting the Parent Support Line and a little sole searching on my part, I have come to the realization that, the diagnosis doesn’t define Tom, it’s just a little part of who he is. He has an amazing yet cheeky personality, gives and has lots of love from his family and friends, has a beautiful voice, a fantastic memory, has mastered riding his bike and scooter, and is very caring. For Tom, Fragile X is why he sometimes gets a little frustrated or over stimulated.

I would definitely encourage any parent with a newly diagnosed Fragile X child, to phone the parent support line. It is wonderful to know that the person at the other end knows exactly what you are going through.

Mel

Useful Support Documents

'Helping Employers Work with FX People":

back to top