Mum talks about son's epilepsy
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00:00So, Leo was my youngest son. He was the youngest of three children. And he was an absolute
00:07ray of sunshine from the minute he was born. He had the biggest smile. There was always
00:11something a little bit different about him. Anyone that kind of came in contact with him,
00:17he would always manage to sort of brighten up their day with his compliments and his
00:22quirky ways. But he was diagnosed with epilepsy when he was three. And whilst that was a massive
00:28shock for myself and my husband and the whole family, really, we were very quickly put on
00:34medication with his epilepsy team. And it was pretty well managed. And it didn't really
00:40affect him too much. But then in COVID, when he was about seven years old, it quickly escalated.
00:48And we lost control completely. And then all of a sudden, in June 2020, we experienced
00:53our first cluster of chronic seizures. And sadly, that was kind of the start of the end.
00:58His seizures became more and more violent in nature. The volume he was experiencing
01:04grew month and month. And we tried medication found after medication found. But the more
01:10we tried, the worse he got. But what we didn't realise was a huge risk, was something called
01:15SUDEP, which is Sudden Unexpected Death in Epilepsy. And then sadly, completely unexpectedly,
01:22on the 14th of December 2023, Leo, two weeks after his 11th birthday, suffered his last
01:28episode of seizure and he died unexpectedly at home.