National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 4224
A good afternoon,
I am writing this email in support of a family that I am very close to; I consider myself
very lucky to know the redacted family I have known and loved this family for almost 40 years.
Their son redacted has a rare genetic disorder, Trichothiodystrophy, and he is now 37 years old.
The redacted is the oldest person in the world with TTD and this is due only to the incredible perseverance, strength, and the love of his family for their son.
Unfortunately redacted and redacted, his parents, are in a constant battle with NDIS to get the care and support that they need and deserve to care for redacted at home.
Please contact redacted, who I have cc ‘d on this email, because they need someone like you to give them the support they need for `. . .
they are exhausted both emotionally and physically and do not need to be constantly having to prove what their son has to have to stay alive but they will not put their adored son into care. Neither redacted or his parents would survive the separation that this would create. Please, I am begging you to reach out to redacted and just hear their story and make a decision yourself about what you can do for them.