00:00So Rett syndrome is caused by a faulty gene, it's a genetic disorder, but it's not hereditary,
00:07it's basically like a one-off, it's called a de novo situation, so it just happens.
00:13When Poppy was born, everything was completely normal, and then between a year and 15 months,
00:20we could see that she wasn't meeting her milestones, and she began to regress,
00:24and then we had genetic testing and found out that she had Rett syndrome.
00:30She's a very special girl, we always say that behind her eyes she's got a really sparkly soul,
00:37so her sense of humour is amazing, she laughs at all the right times,
00:42she has an eye gaze machine and she uses this to talk, she does really funny things like request cocktails,
00:49and asked to go to the pub, things like that, and even though she can't speak,
00:55you know, she has a really strong personality.
00:58So Rett syndrome is just such a devastating condition, there's so many factors to it,
01:04it involves so many different things, epilepsy, musculoskeletal problems,
01:12sometimes inability to mobilise, girls can't use their hands,
01:17so it's a complex and profound disability, and it has multiple disabilities, basically.
01:25So it's just vital to basically get the word out there,
01:31so that people know more about it,
01:33so that we can increase funding for the vital research that's being done.
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