Meet our awesome customer, Veronica, and her daughter, Arianna!
Veronica backed Princess Awesome on Kickstarter two years ago - one of the first customer pictures we received was this terrific shot of Arianna in her Busy Trains Dress.
Since then, we are always so delighted to see Arianna grow and smile - in her dinosaurs, pi, robots, trains and atomic flurry dresses, and most especially, in that fabulously styled rockets dress:
Now we’d like to share Arianna’s story with you. She is a truly awesome, powerful princess!
Arianna is four years old - born October 20, 2013. During the first few months of her life, Veronica noticed that Arianna seemed to be choking and gasping, but tests and doctors’ visits showed nothing abnormal. Yet after five months, Arianna had not gained the weight appropriate for her age. Veronica took Arianna to Massachusetts General Hospital in April of 2014 for extensive medical testing.
After two weeks, the diagnosis finally came in: Arianna has Gaucher’s Disease Type 2. A rare progressive, genetic disorder, Gaucher’s Disease results from the body’s inability to produce an enzyme that breaks down glucocerebroside. As the substance accumulates in the body, it affects the body’s blood cell production, leading to anemia, bruising, and lung disease. It also affects neurological development, causing complications with breathing, swallowing, and muscle control. Most devastatingly, the patient’s lifespan is projected to be only 2-4 years.
Yet Arianna has defied the odds - after spending over a year in the Yale New Haven Children’s Hospital, Arianna has finally been able to consistently live at home with her family for the last fourteen months. She has amazed her doctors and nurses, and in turn they have been able to help other children newly diagnosed with Gaucher’s Disease thanks to Arianna’s response to her treatment.
Veronica quit her job at a law firm in 2014 after Arianna’s diagnosis. The medical expenses related to Arianna’s care have been immense. The family’s monthly premiums are nearly as high as most people pay in an entire year. Many of the treatments are experimental or not yet available for a child of her young age, or not available in the United States, making them difficult to obtain and incredibly expensive.
Now that Arianna is home and no longer an infant, she requires a wheelchair-accessible van. We have helped support Arianna through her ongoing GoFundMe Campaign: Arianna’s Angels, and we hope you will consider contributing to help her too. You can also follow her story on Facebook at Arianna’s Angels. Her latest news (and amazing story) are chronicled on her most recent GoFundMe update.
We are so honored to be part of Arianna’s story. Thank you, Veronica, for sharing awesome princess Arianna with Princess Awesome!
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