00:00Can you tell us about your experience during this training course?
00:10Yes, I signed up for the course as soon as I was aware of it,
00:14precisely because I am a jackal giver of a child with rare disease,
00:18a rather serious and serious disease,
00:20and I wanted to learn more about what can be the management of the disease,
00:27in particular about SLAI.
00:29In fact, I did not know SLAI, I have to say the truth.
00:31I learned a lot, it helps me a lot to manage my son better,
00:35but I hope to be useful also in the management of some other patient,
00:39of some other relative, and also of the family itself,
00:42because, being a mother, I know well that the family itself needs help.
00:47What is the message you want to send to parents who, in short,
00:51face a certain delicate situation like yours?
00:56Don't go, don't end up in discomfort,
00:59because our reality is a bit difficult, it's true,
01:04we can't hide behind a finger,
01:06but there are people who are competent,
01:10you have to find them, but there are competent people,
01:13and you also have to trust others, without resentment, without prejudice.
01:18Let's trust others and let them help us,
01:21otherwise others cannot force us.
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