Katie’s smile is the first thing you notice about her – broad and cheekily beaming. Her smile is her superpower, bringing joy to everyone around her. Yet beneath that smile is a life where challenges are many, and strength and positivity abound.
Katie lives with Angelman Syndrome, a rare genetic disorder which affects all aspects of her life. She was diagnosed at 20 months old after she began having epileptic seizures and showed signs of global development delays. Katie is now 14, and still needs medication twice a day to control her seizures. She is non-verbal, so communication is frustrating and very challenging for Katie and those around her, especially when something is wrong. She also has a sleep disorder and difficulties with mobility. Her severe intellectual and physical disability means that she will require care and assistance 24 hours a day for the rest of her life.
But Katie refuses to be defined by her condition, and does not let it affect her outlook on life. Though she sometimes finds it incredibly challenging, it never dampens her light. Katie is the most loving person you could possibly meet, giving everyone a kiss and hug to put a smile on their face. Despite her daily challenges Katie is full of fun, a happy, cheeky, adventurous girl whose giggles are super infectious.
Katie is the definition of a water baby, and loves nothing more than spending her time on speed boats on a hot sunny day, skimming across the water in a ski tube or perching on the edge of a paddle boat. On the days where she just wants to relax you can find her floating peacefully down the river.
Not only is Katie a water baby – she is also a dancer! Katie looks forward to her dance classes twice a week, and is passionate about movement and the artistic expression that dancing gives her. It is when she dances that she can experience true freedom.
A caring and fiercely courageous girl who wears her heart on her sleeve, Katie is a sparkling light, shining bright in a sometimes mundane world. Her presence in other people’s lives makes their lives better – she is the definition of courage and inspiration.
Katie’s artwork is available for purchase here.