Alberta siblings with rare, terminal disease finally have hope for a treatment
3:58
Alberta siblings with rare, terminal disease finally have hope for a treatment
Aug 10, 2023
Global NewsDestiny Meilleur
Batten Disease
Batten Disease
May 8, 2018
nationwidechildrens.org
Understanding Batten - Beyond Batten Disease Foundation
Understanding Batten - Beyond Batten Disease Foundation
Jan 7, 2020
beyondbatten.org
Family fighting for cure after daughter's batten disease diagnosis
2:32
Family fighting for cure after daughter's batten disease diagnosis
9 months ago
CBS News
“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.” Go behind the scenes with Dr. Emily de Los Reyes. | Nationwide Children's Hospital
1:26
“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.” Go behind the scenes with Dr. Emily de Los Reyes. | Nationwide Children's Hospital
19.7K viewsNov 8, 2019
FacebookNationwide Children's Hospital
What is Batten disease? Doctor and family share insights on rare condition
4:21
What is Batten disease? Doctor and family share insights on rare condition
Feb 27, 2025
MSNFOX 32 Chicago
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 siblings
Jun 24, 2021
Global News
3:31
What Is Batten Disease? 4-Year-Old Boy Receives New Drug For Neurological Disorder
Sep 8, 2017
International Business TimesPritha Paul
23:17
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
617.5K viewsDec 8, 2022
FacebookSpecial Books by Special Kids
3:09
3 children with rare, fatal disease access treatment to prolong their lives
Aug 9, 2023
Global News
0:06
Isaac Fighting Batten Disease | Neither one of us could cope facing this battle alone or without the most amazing people supporting us. Thank you so much to everyone... | Instagram
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