There’s a lot of sadness in the world, so over the past year and a half I have done my best to make sure that Flats Are For Quitters is a site that my subscribers can come to and feel happy, entertained and stress-free while reading. I read METRO Toronto every morning and watch CTV News every night, so I’ll admit that sometimes it’s difficult to find something light to discuss when there is so much sorrow in our own backyards. Perhaps you’re wondering then, why I have decided to publish a story about a girl that is suffering from a rare disease? That’s pretty sad, isn’t it? The answer is yes, it is sad. It sucks, actually! However, this strong little girl is a picture of hope and strength – and that’s not sad at all, that’s beautiful.
Amber Owens Hughes is a 12-year-old Waterloo girl that I have known since the day she was born. Her older sister, Emelie, was my childhood best friend and our moms have been inseparable for as long as I can remember. The Owens Hughes clan is a beautiful family that supports one another and puts each other, above everything else, first. I love them each like they are my own family! Amber and Jet (the youngest of the bunch) even call my mom “Auntie Mia” – an adorable nickname that dates back to the days when Amber couldn’t pronounce “Aunt Maria”. It’s very cute!
Last year, Amber was diagnosed with Primary Ciliary Dyskinesia, which is a rare genetic disorder that impairs the movement of microscopic hair-like structures called cilia. Without properly functioning cilia, people with PCD are unable to protect their respiratory system. Frequent infections of the lungs, ears, throat, and sinuses are common and can lead to serious and permanent damage. While Amber’s condition is not contagious, you can only imagine that her flu-like symptoms (coughing and sniffling) sometimes inspires cautious glares. In an article in The Record Amber explains, “Sometimes it’s hard. [People] move their children away from me because I sound sick when I cough.” While doctors unfortunately treated Amber’s disorder as asthma for the last 12 years, the Owens Hughes family is relieved to finally have a diagnosis that they can work with.
While Primary Ciliary Dyskinesia can cause ear infections, hearing loss, severe sinus infections, fever, excess mucus and dizziness, Amber is not letting her condition get the best of her. Amber is one of the most talented young ladies that I have ever met. Not only is she HILARIOUS – like really funny – she is a talented singer and actress. Amber is a member of the Kitchener-Waterloo Glee Club and has performed in live productions with the KW Children’s Drama Workshop for several years. In addition to her love of the arts, Amber is passionate about jewelry making. For the past few years, Amber has sold handcrafted bracelets to raise money for earthquake relief in Haiti and cancer research. Since her diagnosis, Amber has decided to donate her proceeds to Sick Kids and Primary Ciliary Dyskinesia efforts.
I am so proud of Amber for her strength and love of life! She is in my prayers everyday and I know that she is going to make a big difference in this world. If you would like to learn more about Primary Ciliary Dyskinesia please visit www.pcdfoundation.org or click HERE to donate to the cause.
We love you Amber!
Tags: Amber Owens Hughes, Kitchener-Waterloo Glee Club, KW Children's Drama Workshop, Primary Ciliary Dynskinesia