Stromme Syndrome Q&A -- Everything You've Ever Wanted to Know!

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  • เผยแพร่เมื่อ 20 พ.ย. 2024
  • In today's video, I spend some time answering the most frequently asked questions I receive about Strømme Syndrome and Ruby. Also, I talk about how we decided to bring Stella into our lives. Look below for timestamps for all of the questions!
    01:45 - When and how did you find out Ruby had Stromme Syndrome?
    04:38 - How does Stromme Syndrome affect Ruby's senses?
    06:50 - What is Apple Peel Atresia?
    08:03 - What is most difficult about being Ruby's mom -- then and now?
    10:19 - What special education and therapies is Ruby in?
    10:40 - What milestone are you most proud of in Ruby's development?
    11:06 - Do you think Ruby understands the differences between her and her peers?
    11:14 - Do you worry about Ruby being bullied for her differences?
    12:03 - What are Ruby's interests and what makes her happiest?
    12:44 - How did you get Stella and how has she impacted Ruby's life?
    14:40 - How much research is being done on Stromme Syndrome?
    15:49 - What level of privacy do you maintain for Ruby?
    16:55 - Does Stromme cause a shorter life expectancy?
    17:22 - Is Ruby's vision getting better or worse?
    17:46 - If there was one thing you could say to the world about Stromme, what would it be?
    18:11 - What's your main message in all of your advocacy efforts?
    Continue the conversation on our other social channels:
    Instagram: / angieandruby
    Facebook: / angieandruby
    Twitter: / angieandruby
    Music by IKSON
    / ikson

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