“It was like someone hit a reset button.”
When Ashlyn woke up she couldn’t walk or talk. Days before, she had been able to do both those things. Ashlyn had been confined to a stiff, white hospital bed for over a month, weathering a dystonic storm. This ‘storm’ does exactly what it says: it runs rampant throughout a healthy body, leaving a trail of debris, pain, and damage. A Dystonic storm is a rare and intense episode of generalized Dystonia. And Dystonia is one of the most frightening words a parent can hear: it’s a movement disorder that causes muscular contractions and spasms – typically caused by a neurological disease or a side effect of drug therapy. The thing was, Ashlyn had neither.
When Ashlyn was born on October 23, 2002, she was the apple of her parent’s eye. She was universally adored, especially by older brother Quinton. When brother Keaton arrived two years later, it solidified Ashlyn’s position as reigning princess of the Lacey family. For a few blissful years, everything was fine. Then one day, when Ashlyn was about 2 1/2, Greg and Laura noticed she would drag a leg behind her as she walked. Confused, they began their long journey towards finding out what was wrong with their little princess.
Over the course of the next year, symptoms worsened to include tremors, affected speech, and slowed movements. Even though Ashlyn had a spinal tap and an MRI, the results came back normal for both. No one could tell Ashlyn’s parents why their daughter’s abilities were rapidly disappearing before their eyes. Once Ashlyn started falling, she began to use a walker. Although being in the dark was stressful and nerve-wracking, the family was coping with their daughter’s changing needs.
Then, the storm hit.
After the month-long whirlwind, Ashlyn came out of it just 18 lbs., relying on a g-tube for food. “She never walked again,” said Laura, “and her talking was non-existent.” This was a far cry from their lively, healthy daughter they had known for the last three years.
These days, Ashlyn lives the life of a normal pre-teen girl. She is on the A honor roll at school and has lots of friends. Although physically she is deeply affected by dystonia, cognitively she exceeds most of her teacher’s expectations. Luckily, in 2nd grade, Ashlyn began using a Dynavox eye gaze communication device. She uses it to communicate every day, and it is also the way she completes homework assignments. However, there is one issue. The machine is bulky and attaches to the wheelchair Ashlyn uses at school. Because the Laceys did not have an ADA vehicle, they left Ashlyn’s school wheelchair (along with her eye gaze machine) at school in order to transport her home. This left Ashlyn stranded – without means of communicating – for anytime she wasn’t at school.
That wasn’t good enough for the Laceys. Ashlyn yearned to communicate all the time, not just when she was at school. Determined to fight for the best life for their daughter, Greg and Laura began to look for a way to give Ashlyn freedom, independence, and safety. They needed an ADA van. But when they started looking, they realized they couldn’t afford one alone. Luckily, there is a community of people with big hearts and a mission to make the world 10% happier. The Laceys just didn’t know about them yet.
One day, while on Facebook, Laura and Greg stumbled across a page called Chive Charities. They worked their way through the photos of kids, families, veterans, non-profits… all of whom had been helped by this organization. They scrolled through hundreds of comments about “making the world 10% happier” and “giving a megaphone to the orphaned causes.” They couldn’t believe what they had found. This was the answer they needed; these were the people who were going to give their daughter the life she deserved.
Together they applied for a grant to give Ashlyn an ADA van with a ramp. If they were approved, they would have the ability to get Ashlyn, her wheelchair, and her communication device from school, to home, to doctors appointments, to weekend adventures. Chive Charities, with a $55,000 grant from Chive Fund, was able to purchase for the Lacey family a 2015 Honda Odyssey with a wheelchair ramp conversion.
The Laceys knew that their daughter’s special needs weren’t a handicap, but just another detail about their princess that made her so special to them. Ashlyn loves the color pink, America’s Funniest Home Videos, and her French Bulldog Mr. Biggs. She is a dare devil and is full of surprises. She loves shopping as much as she loves camping.
She also has Dystonia. But it has never limited her. And now, with the van, the communication device, and the support of Chive Nation, it never will.
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