We recently started a Facebook page to share Rowan’s journey with CLN3 Batten disease, please like her page to follow along. [ Ссылка ]
In the last three weeks since we first shared her story, nearly every day a new, unexpected, and otherwise unlikely connection has been made through an intricate web of social sharing that continues to tell us how important it is to get Rowan's story in front of as many people as possible. [ Ссылка ]
Every share, comment, like, follow, donation (no matter how small), pushes her story through the maze of metrics and into the feeds of people across the country.
We went public with our devastating news just days after Christmas, at a time when wallets are thin from holidays, travel, and charity. We are so thankful to those that have showed us our girl matters through these transformative gifts. Please follow her page so you can learn a little more about the girl you are helping and invite your friends.
Please thoughtfully think through your own networks (on Facebook and offline) and if you have any connections you feel may be helpful, message us. [ Ссылка ]
We recently shared her story through two news outlets:
WISH-TV: [ Ссылка ]
Fox59: [ Ссылка ]
Rowan is a singer so we wanted to share another video of her singing another favorite “Jesus Loves Me.” Please share the news links, her page, her story. Please continue to help make a difference for Rowan! Thank you so much to all those here and helping to give her more time. We don't know what the future holds but right now she's here, she's happy and we want to keep her that way for as long as we are able. Thank you! #rowfightwin #rowankater #cln3 #battendisease
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