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?
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Music by IKSON
https://soundcloud.com/ikson