Young football players in Western Sydney say the women's world cup has given them every hope of following in the matildas' footsteps and forge a career in the sport. The Blacktown Spartans has seen a surge in interest over the last three years, and three of its former players are now playing in the women's world cup.
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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]