I see that Federal Member for Robertson Gordon Reid is to Chair an Epilepsy Awareness Group.
Hooray – finally epilepsy is to get some attention.
Epilepsy is very misunderstood, and I often hear people say, “oh you grow out of it”.
If only it was that easy.
As a parent of a son who suffers with uncontrolled epilepsy, I have seen it steal away his life.
Imagine watching your child look at you in terror as they go into a seizure, watching them turn blue and gasp for air as their body contorts so much you think it might break and there is nothing you can do but hope that they will survive – it’s heartbreaking.
Like others, my son sustains injuries as a result of his epilepsy so having survived the seizure he has had to cope with dislocated shoulders; he has broken his foot, bitten his tongue and hit his head more times than we can count.
For some people like my son having seizures can mean they have memory issues, low confidence, loss of employment, inability to hold a driving licence, depression and discrimination.
The ultimate insult is that those suffering with uncontrolled epilepsy cannot get any help on the NDIS.
We have been declined four times now despite all the specialists saying there is nothing further that can be done to help my son.
It appears that the NDIS takes the view that epilepsy is “curable”.
Obviously they know something the experts don’t!
Maybe Gordon Reid and (co-Chair) Henry Pike MP could consider this as part of raising awareness and let’s hope it’s not more lip service.
Email, Apr 22
Nicola Ross-Adams, Erina