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Treatment for James "CountB" Savage's condition now on the NHS
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Andrew Oakley
Jul 10, 2021, 8:16:32 AM7/10/21
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Some of uk.people.gothic's long term readers may remember James "CountB" / "Count Bryce" Savage, who authored the uk.people.gothic FAQ with me, in the mid to late 1990s / early 2000s.
His stretcher-wheelchair was a familiar sight at many goth gigs in the South West, as he had Spinal Muscular Atrophy and had to spend almost his entire life lying down, able to move only his head, one finger and one thumb (Apple Mac user, obviously). He died in December 2006 in his mid 30s from breathing complications related to the disease; at that time he was the oldest person with his condition - few survived past their teens, and until the last year it was incurable.
Today the NHS approved treatment for Spinal Muscular Atrophy for a baby in Colchester.
https://www.bbc.co.uk/news/uk-england-essex-57776754
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Andrew "evilandi" Oakley
net.goth desk Whitby 1997 archive: http://www.aoakley.com/archive/
His stretcher-wheelchair was a familiar sight at many goth gigs in the South West, as he had Spinal Muscular Atrophy and had to spend almost his entire life lying down, able to move only his head, one finger and one thumb (Apple Mac user, obviously). He died in December 2006 in his mid 30s from breathing complications related to the disease; at that time he was the oldest person with his condition - few survived past their teens, and until the last year it was incurable.
Today the NHS approved treatment for Spinal Muscular Atrophy for a baby in Colchester.
https://www.bbc.co.uk/news/uk-england-essex-57776754
--
Andrew "evilandi" Oakley
net.goth desk Whitby 1997 archive: http://www.aoakley.com/archive/
Fuzzygoth
Jul 29, 2021, 3:22:28 AM7/29/21
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I remember having a few conversations with him he was a great lad even though I only met him a handful of times on my travels outside of this group and remember being sad when I heard he passed.
This is great news though that there is now a treatment for his condition.
Fuzzy
This is great news though that there is now a treatment for his condition.
Fuzzy
Sciamachy
Feb 3, 2023, 1:01:58 PM2/3/23
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Matt/Skiamakhos
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