Ashley the Mermaid Jedi

August 03, 2016

During Star Wars Weekends at Disney's Hollywood Studios a few years ago, I was lucky enough to encounter a young girl named Ashley. I spotted her while sitting on the sidewalk in anticipation for the Legends of the Force afternoon parade. She and her older sister, Lindsey, were both seated in wheelchairs with huge smiles on their faces while chatting with their mom and dad. It was obvious that these girls were ecstatic to watch their favorite Star Wars characters and celebrities in the upcoming parade. While it didn't bother me much, I silently wondered to myself why these girls who looked so healthy and happy were stuck in wheelchairs.

Fast forward to the next year of Star Wars Weekends and I saw them again. This time it was in Darth's Mall, the Star Wars themed shopping center where I was helping out at the Her Universe booth. I noticed that Ashley and her sister were dressed in the cutest handmade T-shirts and matching tutus themed after their favorite characters, Chewbacca and R2-D2. I complimented their outfits and coordinating accessories while their mom took a photo of us together.

Lindsey (left) with Ashley (right) and I at Star Wars Weekends.
Sometime along the way of seeing them at Star Wars Weekends every year, Ashley's mom, Mary, explained to me that Ashley and Lindsey suffer from Juvenile Arthritis, which is why they use wheelchairs most of the time to get around. Both girls receive Remicade for their arthritis to prevent their spines from fusing. They also have an immune deficiency in which they must receive monthly infusions of antibodies via ports implanted in their chests to help mend their systems. Their lives have always revolved around regular hospital visits and treatments, but they were still able to live fairly regular lives like most kids.

Unfortunately, Ashley's health started declining rapidly about two years ago. She is now 13 years old and faces many new challenges with her body. In addition to her arthritis and immune deficiencies, she's been diagnosed with Epilepsy, Vasovagal Syncope, Colitis, Crohn's, and Gastroparesis. Her body isn't metabolizing pills and recently had a feeding tube put in to assist with that. She started experiencing weakness in her upper legs, which has now progressed into complete weakness and numbness in both legs. While she used to have the ability to transfer out of her wheelchair and walk around, she is unable to walk anymore and also struggles with loss of bladder function.

Ashley with a very special visitor during one of her most recent hospital visits.
Ashley receives IV saline at home to keep her body functioning due to the fact that she's been close to kidney failure multiple times. She's been hospitalized six times since April and her body is getting weaker by the day. Something I love about Ashley is that she turns this horrible experience into a positive one by comparing herself to her favorite Disney princess, Ariel from The Little Mermaid. She says she has "mermaid disease" because she struggles with walking and needs saltwater (saline infusions) to function. She tells everyone she's a mermaid as a way to cope with her failing body and changing life.

In an effort to figure out a treatment plan for all of these issues, Ashley will be going to Boston Children's Hospital next month for a six week long trip. She's also scheduled to have spinal surgery in October, which has 50/50 odds of helping and has been told that the feeling in her legs may not return. As you can imagine, her parents face many hospital bills that are becoming harder and harder to keep up with. If you'd like to support this family and help Ashley with her battle against these health problems, please consider visiting their Go Fund Me page and donating.

Ashley with Chewbacca at Disney's Star Wars Weekends before her health plummeted.
Ashley is one of the brightest stars I've ever had the pleasure of knowing. Always smiling, always positive, and always radiating with beauty inside and out. It breaks my heart to know that she is unable to live a "normal" life because her body is failing. No 13-year-old should have to miss their favorite summer camp because they are stuck in a hospital and having a feeding tube put in. She is stronger than any Jedi in the Star Wars universe, but I know know the recent months have been super tough for her family and they would appreciate any donations, prayers, or kind words you can give. If you'd like to send Ashley well wishes or encouragement, please leave a comment below and cheer her on.

Here is Ashley's Go Fund Me page- https://www.gofundme.com/2ha4r98

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