Connor is diagnosed with a deadly and mostly invisible disease known as Barth syndrome. This genetic condition weakens every muscle in his body including the heart. Connor wants his friends to know that there is a reason he struggles to keep up while playing. | Special Books by Special Kids
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Connor is diagnosed with a deadly and mostly invisible disease known as Barth syndrome. This genetic condition weakens every muscle in his body including the heart. Connor wants his friends to know that there is a reason he struggles to keep up while playing. | Special Books by Special Kids
870.4K viewsSep 6, 2022
FacebookSpecial Books by Special Kids
Five-year-old Joe has Barth Syndrome, which weakens his muscles, including his heart. Aged just two-and- a-half years-old he spent a record breaking 251 days being kept alive by an artificial heart until a suitable donor was found. Thanks to BBC Children in Need funding, mum Rachel regularly gets a break while a nurse from the Jessie May Trust in Bristol entertains and looks after Joe. To help us help more families like Joe's, please give whatever you can and make our Appeal Night total even big
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Five-year-old Joe has Barth Syndrome, which weakens his muscles, including his heart. Aged just two-and- a-half years-old he spent a record breaking 251 days being kept alive by an artificial heart until a suitable donor was found. Thanks to BBC Children in Need funding, mum Rachel regularly gets a break while a nurse from the Jessie May Trust in Bristol entertains and looks after Joe. To help us help more families like Joe's, please give whatever you can and make our Appeal Night total even big
46.4K viewsNov 20, 2014
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A first-of-its-kind therapy based on research at Johns Hopkins Medicine was approved by FDA for Barth syndrome, a rare disease that causes muscle and heart weakness and shortened lifespans. This approval could lead to development of similar therapies for mitochondrial disorders, which affect 1 in 5,000 people worldwide. | Johns Hopkins Medicine
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A first-of-its-kind therapy based on research at Johns Hopkins Medicine was approved by FDA for Barth syndrome, a rare disease that causes muscle and heart weakness and shortened lifespans. This approval could lead to development of similar therapies for mitochondrial disorders, which affect 1 in 5,000 people worldwide. | Johns Hopkins Medicine
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