Childhood dementia is a form of progressive brain damage that can be triggered by rare genetic disorders. The ABC was joined by Gail Hilton head of programs at Childhood Dementia Initiative and Louise Jessop whose son, Dylan, was diagnosed at the age of two. She says the disease is heartbreaking.
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00:00 It's heartbreaking to watch your child slowly fade away and eventually die.
00:10 It's such a rare condition, not well known.
00:17 We just need to find a cure, get information out there and find a treatment
00:27 so that children that are born in the next couple of years
00:31 don't have to go through progressive brain damage,
00:34 don't have to lose all their abilities,
00:37 their siblings don't have to watch their brother or their sister slowly fade away
00:43 and parents won't have to hold their child as they take their last breath.
00:47 It must be incredibly difficult for you to support your child through this,
00:55 your family through this and with the experience of Dylan's passing as well.
00:59 It must be something that you want for no family to have to go through.
01:04 Thank you Louise for sharing this with us.
01:07 Gail, how challenging is it for families to be able to get help with a diagnosis
01:12 to get the support that they need, families like Louise and Dylan's?
01:17 I think that what we hear from families is that,
01:21 and this is universally, every family that I have spoken to
01:24 in the research that we're beginning to publish,
01:27 families tell us that they have to fight for everything they need
01:31 in both our health system and disability system here in Australia.
01:35 These are families that are in many respects doing it the toughest.
01:39 They have a life-limiting diagnosis for their child
01:44 and they know that the care needs are going to ever increase.
01:48 Along with that, that knowledge and that grief that they're experiencing,
01:53 they have to advocate tirelessly in every system to get what they need
01:57 and I think that's just not acceptable.
02:00 Is that something that you feel was your experience as well, Louise?
02:04 I imagine given the lack of awareness around this,
02:07 even just having a diagnosis must be really challenging.
02:10 I equate it to feeling like we were in a fight.
02:15 We were in a fight for the diagnosis.
02:18 We were then in a fight and advocating for his needs to be met
02:24 and we're not just talking about in the health system,
02:27 we're talking about with education, disability supports.
02:30 We were fighting this unknown condition.
02:33 We didn't know how long Dylan was going to be with us.
02:36 And, yeah, something needs to change.
02:42 Yeah.
02:44 [BLANK_AUDIO]