Frequently Asked Questions
You guys have questions about Ruby and I’ve (hopefully) got answers for you! Here are some of the most commonly asked questions about Ruby:
- How old is Ruby? Ruby is 14 years old, with all the teenage sass to go along with it.
- What is Ruby’s diagnosis? Ruby has a rare genetic condition called Stromme Syndrome. She was diagnosed with this condition when she was in the NICU, but at the time, it was called “Apple-peel intestinal atresia, ocular anomalies and microcephaly syndrome,” which is basically just a listing of the “symptoms” of the syndrome. It was so rare back then that it didn’t have a formal name. I pretty much gave up hope on ever getting more information on the syndrome due to its rarity and actually stopped going to geneticist appointments because they were pointless. Then two years ago, a friend introduced me to a woman whose daughter had been diagnosed with Stromme. The similarities between our daughters were striking! That’s when I realized the syndrome had finally gotten a name. Since Ruby’s story went viral, I have met a few different families who have children with the syndrome, which leads me to believe there are more cases than I was originally told.
- Can Ruby see? One of the elements of Stromme syndrome is “ocular anomalies,” which really just means things that are out of the ordinary about the eye, because it varies from person to person. Ruby was born with smaller than normal eyes and her corneas were extremely clouded (a condition called Peter’s anomaly). In the early days, doctors believed she was likely totally blind. We talked about transplanting new corneas to give her eyes a clear new “window” to see out of, but decided against it because it would involve transplantation drugs and could mess up the vision she has. At one point, doctors thought her left eye was totally blind but that has ended up being her better eye–funny that! As she got older and was able to move around more and her understanding of the world increased, we realized that she could in fact see light–she would turn toward it–and she could see colors–she would match colored circle chips and tap them together. Read this to learn more about Ruby’s vision.
- Will Ruby get glasses? Because Ruby also has developmental delays and her vision is so poor, it is difficult to perform standard vision tests. I’ve discussed glasses (and other options) at length with her pediatric ophthalmologist at several different occasions and there’s just no way to know how to correct her vision at this point, so glasses are not currently an option.
- Will Ruby have braces? I have been told that I need to get Ruby braces for her looks and speech by total strangers. The truth is, Ruby is not yet ready for braces due to some teeth still coming in and needing to have certain teeth surgically removed (a surgery I will not worry about until summer). Once all of those things are in order, we will consider braces, if it makes sense for Ruby.
- Does or will Ruby get her period? This is highly personal and I will never, ever share such intimate details about Ruby’s life on the internet. What I will say is that Stromme doesn’t have any impact on the reproductive system. And that’s all I’ll ever say.
- Where is Ruby developmentally? I will be honest — I have never been a fan of labeling Ruby as any age other than her real age. I’ve also really never been interested in knowing where she falls in age developmentally, because as far as I’m concerned, Ruby is just Ruby, in all her uniqueness. So, I’m not really sure what her developmental age is. But, because Ruby has microcephaly (small brain) and is impeded by her poor vision, she is delayed cognitively. Over the years, she has received countless hours of speech, occupational, physical and vision therapies in addition to receiving special education services at school.
- Does Ruby go to a special school? No, Ruby goes to a typical high school in our community. She spends a majority of her day in her special education classroom where she receives instruction tailored to her unique needs. During the day, various general ed students come into her classroom and help her with her studies and socialize with her. While I am a huge proponent of mainstreaming when it makes sense, it didn’t make sense for Ruby to spend the majority of her time in the typical high school classrooms. The content is way too challenging and I felt that Ruby would not thrive in that environment.
- Why does Ruby flap her hands? While I can’t tell you the exact reason she does this, after 14 years of observing her, I’m pretty sure that when she’s really happy, her body gets overloaded with the excitement and she has to physically “shake it out.” Ruby never does this when she’s stressed out or upset, so I know that it’s due to happiness and excitement.
- Did you try to make Ruby’s video go viral? As a marketer, I wish that I could say I cooked up an amazing plan to make that first video of Ruby go viral because I would replicate it for all of my clients! The truth is, I had no idea this would ever happen and I was totally taken off guard by the whole thing. I even contemplated shutting down our page because the attention was so overwhelming at first.
- Does Ruby know that she has so many followers on Instagram? Is she affected by online bullying in any way? Ruby doesn’t understand the concept of social media. All that she knows is that she loves making and watching videos of herself and she loves it when I read the comments or play videos from our amazing followers. I will never tell Ruby about the online bullying that has occurred, so she is safely insulated from all of it. I wish she could understand the impact she has had on the world, but I think that’s what makes her so special — she is completely free of ego and none of that matters to her.
- Where is Ruby’s dad? This is one of those topics that I don’t really like talking about, but I have been asked about a lot lately. Ruby’s father passed away before she was born and before we even knew she had a disability. Her father struggled with depression and could not go on with his suffering. I think about him every day and know that he’s watching over us and helping Ruby’s life to be amazing. You can read more about that story in our Love What Matters article.
- Who are those two boys we sometimes see in videos/photos/stories? Those are my boyfriend’s sweet sons, Sam & Nick. They are so amazing with Ruby, treating her just like any other friend. We love doing things together and they are always willing to help Ruby experience life to the fullest.
- Will Ruby ever drive, live alone, get married, etc? Well, I’m not a psychic, nor do I like making predictions about the future, so I really can’t answer this questions with any certainty. What I do know is that I will continue to give Ruby the best life possible, hopefully one that is as independent as possible. I already have ideas in the works for her living situation as she gets older, because I think it will be good for us to live apart some of the time, someday. And she looks forward to spending a month here and there with my parents when they eventually retire and snowbird at their condo in Florida.
- Does Ruby ever get sad or mad? Just like any 14-year-old, Ruby has days where she doesn’t want to get out of bed, when she hates everything I say or do, when she resists doing anything I ask and just wants to slam her door and be alone in her room. Most of the time, she is happy and sweet, but she’s a human just like you and me, so there are ups and downs. I have always thought it was unfair when parents post photos or videos of their children having meltdowns, temper tantrums, crying, etc., because the kids have absolutely no choice in the matter whether their private moments are broadcasted in a very public way. I have always vowed to keep Ruby’s online presence as positive and dignified as possible. I mean–would I like it if someone posted my crabby moments on Instagram without my consent?! I try to be as real as possible through my writing, describing our less-than-perfect moments in a way that shows the reality without disrespecting Ruby’s privacy.
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