What Is Coffin-Lowry Syndrome (CLS)? Signs, Causes, Diagnosis And Treatment Of This Rare Genetic Disorder
What Is Coffin-Lowry Syndrome (CLS)? Signs, Causes, Diagnosis …
Feb 11, 2021
onlymyhealth.com
Dave is diagnosed with Coffin-Lowry syndrome. This rare genetic condition makes it difficult for him to walk, talk and live independently. If he had one wish, Dave would want to "smile and stay happy". | Special Books by Special Kids
14:59
Dave is diagnosed with Coffin-Lowry syndrome. This rare geneti…
802.8K viewsNov 27, 2019
FacebookSpecial Books by Special Kids
7 days left to shout love for Stella, Auron Ruby!🎉 These three amazing kids have found each other through a shared rare diagnosis journey with Coffin-Siris Syndrome (CSS). Throughout the month, we’ve been sharing Auron, Ruby and Stella’s story to help raise awareness for CSS. Every purchase this month will help with the cost of adaptive bicycles for Ruby and Stella, and a special trip for Auron with his family. Visit www.goshout.love to learn more about their story. #goshoutlove #shoutloveforAu
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7 days left to shout love for Stella, Auron Ruby!🎉 These three amazin…
1.3K viewsJan 19, 2023
FacebookGo Shout Love
Coffin-Siris syndrome is a rare genetic condition that is caused by variants in one of several genes. Depending on the mutated gene, several body systems can be affected that then causes a variety of symptoms. There are only 500 cases of Coffin-Siris syndrome known worldwide. This month, we’ll be sharing the stories of 3 kids who are part of the Coffin-Siris syndrome community: Ruby, Stella, and Auron. Even among these three little warriors, CSS shows up differently. 💜 For Ruby, the main proble
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Coffin-Siris syndrome is a rare genetic condition that is caused b…
14.1K viewsJan 21, 2023
FacebookGo Shout Love
‘I spent the first year of my child’s life blaming myself, not wanting my child to have ‘special needs.’: Mom to daughter with Coffin-Siris Syndrome urges ‘you are your child’s best advocate’
‘I spent the first year of my child’s life blaming myself, not wanting m…
Oct 25, 2021
lovewhatmatters.com
‘She is the only person I know of with this mutation.’: Mom shares daughter’s journey with rare Coffin-Siris Syndrome, ‘We are the lucky few’
‘She is the only person I know of with this mutation.’: Mom shares d…
Oct 8, 2021
lovewhatmatters.com
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