In this episode, Danielle Williams, a special needs mum to 2 complex girls with a rare genetic condition called SYNGAP, shares her experience and thoughts on having children with Syngap, their therapies, their experience with NDIS, and so much more.
They are closely connected to individuals and families all over the globe who have the same symptoms their girls have. They have set up fundraising efforts through Syngap Research where they have partnered with the Epilepsy Foundation. They also co-founded a group called SYNGAP Global Network with people from all over the world who are advocates in their own countries.
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Episode highlights:
- Danielle shares the story of her 2 girls with a rare genetic condition called SYNGAP.
- The symptoms and behaviours of children with SYNGAP.
- Their experiences and struggles in getting the diagnosis.
- Co-founding a global SYNGAP network and setting up a fundraising platform.
- The family’s experience in dealing with allied health professionals.
- Taking a breather from therapies.
- Important things health professionals need to know from a mother’s / family’s perspective.
- Their experience with the NDIS and what it has enabled them to do.
- Her hopes and dreams for her 2 girls in the next 5 years.
- Danielle’s message to allied health professionals as a parent of children with complex needs
Useful Links:
Syngap Research Australia
- Fundraising Page: http://www.supportepilepsy.com.au/event/SynGAPresearch
- Facebook: https://m.facebook.com/Syngapresearch/
- Twitter: @SyngapAus
Syngap Global Network Website for Australia
- Australia Website: https://www.syngapglobal.net/australia
- Facebook: https://www.facebook.com/SyngapGlobalNetwork/
GETA: Genetic Epilepsy Team Australia
- Website: www.geneticepilepsyteam.com.au
- Facebook: genetic.epilepsy.team.australia
- Twitter: @geneticepliepsy
