Inclusion of Mosaic Fragile X in Better Start Initiative
Mosaic Fragile X children suffer from the same symptoms as Full Fragile X children, however they receive no funding or assistance by the Australian Government. Mosaic Fragile X needs to be included in the Better Start for Children with Disability initiative for FaCHSIA funding.
My son is Mosaic Fragile X and is severely impacted by the syndrome. We are just 'fortunate' he also has an Autism diagnosis or he would receive no help at all. Not all Mosaic FXS children are as 'lucky' as he is and for them there is no funding or services. With therapy sessions running at $120 to $160 per session it is outside the budget of an average family to fund the kind of treatment that has been shown to make a huge difference to the development of these kids.
http://myfragilexboy.blogspot.com.au/p/mosaic-fragile-x.html Please sign this petition and get these words removed from the Better Start registration page : "
Fragile X syndrome: all children with a confirmed diagnosis of Fragile X syndrome with full mutation."
(
http://www.fahcsia.gov.au/sa/disability/progserv/people/betterstart/Pages/rego_docs.aspx)
We the undersigned would like Mosaic Fragile X children to be included in the Better Start for Children with Disability initiative. Currently the Better Start registration form states: "
Fragile X syndrome: all children with a confirmed diagnosis of Fragile X syndrome with full mutation.". It has been our experience that Mosaic Fragile X are in just as much need of assistance and early intervention as Full Fragile X children .
Please address this exclusion and help these children who so desperately need it.
Thank you for considering our petition.
