Our little girl Matilda's battle with rare Batten Disease
4:20
Our little girl Matilda's battle with rare Batten Disease
31.9K viewsAug 22, 2016
YouTubeElizabeth Sanson
“It’s Dr. Emily’s relentless effort to stop Batten disease in its tracks that’s given our daughter a quality of life we didn’t think was possible when she was first diagnosed. I just want to hug her every time I see her.” -Tayla’s Mom #WomenInScienceDay | Nationwide Children's Hospital
1:26
“It’s Dr. Emily’s relentless effort to stop Batten disease in its tracks t…
57.6K viewsFeb 11, 2020
FacebookNationwide Children's Hospital
Ultra rare ‘one-in-eight billion’ genetic disease hits 3 Alberta siblings
2:58
Ultra rare ‘one-in-eight billion’ genetic disease hits 3 Alberta sibli…
Jun 24, 2021
Global News
A new children's book is helping families talk about rare, fatal Batten disease
A new children's book is helping families talk about rare, fatal Batte…
Dec 3, 2022
ABC NewsKathleen Calderwood
Ellery is diagnosed with a progressive and terminal disorder known as Batten disease. This deadly disease takes away a child’s ability to walk, talk, speak, and see. As of now Ellery is still able to say a few words like “Mickey” and “Twinkle” but her parents know this will not last forever. Ellery’s mom wants the world to know that they try to focus on the joy but Batten disease is forever destroying a part of their family. | Special Books by Special Kids
23:17
Ellery is diagnosed with a progressive and terminal disorder …
616.2K viewsDec 8, 2022
FacebookSpecial Books by Special Kids
Batten Disease is a rare, terminal neurodegenerative condition that severely impacts children and young people. It’s heartbreaking, and I want to thank the Batten Disease Family Association for their tireless support of families facing this cruel disease. | Ed Davey
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Batten Disease is a rare, terminal neurodegenerative condition that …
2K views10 months ago
FacebookEd Davey
A Child With Batten Disease
5:21
A Child With Batten Disease
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5:48
This is a really heartbreaking story but please stay with us. It’s a stor…
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Christiane's Story — Batten Disease
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YouTubeTexas Children’s Hospital
2:32
Family fighting for cure after daughter's batten disease diagnosis
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kane's story- late infantile batten disease
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