Charlotte just turned five. It's expected she will only live until 14, at most. She was diagnosed with Battens Disease CLN2 - an incredibly rare terminal condition which causes the neurological system to decline over time - also known as Childhood Dementia. Her family is making the most of every day they have with her, while spreading awareness on the cruel disease. To learn more, visit https://m.youtube.com/watch?v=JSEH0OIeK9I&feature=youtu.be or the News Section of our website. #AlwaysCare #Ba
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Charlotte just turned five. It's expected she will only live until 14, at most. She was diagnosed with Battens Disease CLN2 - an incredibly rare terminal condition which causes the neurological system to decline over time - also known as Childhood Dementia. Her family is making the most of every day they have with her, while spreading awareness on the cruel disease. To learn more, visit https://m.youtube.com/watch?v=JSEH0OIeK9I&feature=youtu.be or the News Section of our website. #AlwaysCare #Ba
58.1K views6 months ago
FacebookGold Coast Health
Rare Disease Day - Batten Disease CLN2 Awareness 💜 In honour of Mackenzie Gair 💜 Forever in Our hearts | Mackenzie's Hope
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Rare Disease Day - Batten Disease CLN2 Awareness 💜 In honour of Mackenzie Gair 💜 Forever in Our hearts | Mackenzie's Hope
1.3K views4 months ago
FacebookMackenzie's Hope
A massive thank you to granadareports for their continued support as we battle to gain NHS funding for the treatment of CLN2 Batten Disease ❤️ A special thank you to reporter Anna Youssef for being so kind and understanding. Please share to help us as a community to gain more public support. | Ollie's Army Battling Against Battens
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A massive thank you to granadareports for their continued support as we battle to gain NHS funding for the treatment of CLN2 Batten Disease ❤️ A special thank you to reporter Anna Youssef for being so kind and understanding. Please share to help us as a community to gain more public support. | Ollie's Army Battling Against Battens
5.6K viewsMar 13, 2025
FacebookOllie's Army Battling Against Battens
These are just a few of the faces of the children who are receiving Brineura, the enzyme replacement treatment for CLN2 Batten Disease. Currently NHE England and Biomarin are in commercial discussions, in order for the treatment to continue in the UK a financial agreement must be met. Currently The National Institute for Health and Care Excellence are saying that due to the lack of long term evidence and the fact the treatment is not a long term cure it is unlikely that the treatment will be cos
1:29
These are just a few of the faces of the children who are receiving Brineura, the enzyme replacement treatment for CLN2 Batten Disease. Currently NHE England and Biomarin are in commercial discussions, in order for the treatment to continue in the UK a financial agreement must be met. Currently The National Institute for Health and Care Excellence are saying that due to the lack of long term evidence and the fact the treatment is not a long term cure it is unlikely that the treatment will be cos
5.9K viewsFeb 9, 2025
FacebookOllie's Army Battling Against Battens
CLN2 Batten Disease is slowly taking Liam’s abilities, but it can’t take his light. At just 5 years old, Liam faces challenges no child should have to endure. Follow along as we cherish every moment and continue to fight for Liam’s future. #BattenDisease #CLN2Awareness #RareDisease #FightForLiam #LiamsLight #ChildhoodDisease #BattenWarrior | Honor Crawford
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CLN2 Batten Disease is slowly taking Liam’s abilities, but it can’t take his light. At just 5 years old, Liam faces challenges no child should have to endure. Follow along as we cherish every moment and continue to fight for Liam’s future. #BattenDisease #CLN2Awareness #RareDisease #FightForLiam #LiamsLight #ChildhoodDisease #BattenWarrior | Honor Crawford
3.5K viewsSep 6, 2024
FacebookHonor Crawford
Infusion Day to help slow down the progression of CLN2 batten disease. #fyp #foryou #ytshorts
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Infusion Day to help slow down the progression of CLN2 batten disease. #fyp #foryou #ytshorts
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