Being a teenager in 2020 was difficult. For Ashley, a 15-year-old living with Juvenile Huntington’s disease, feelings of isolation that already existed were further magnified by the pandemic. Her school went all virtual, activities were canceled, and her social circle was limited. But there was still one place she could go to feel independent and interact with others – Crescent Cove.
Ashley was a healthy baby. She was adopted by Wendy and Tim at 4-months old, and hit all the infant milestones. But as a preschooler she experienced developmental delays, and when she began school she struggled with ADHD. The challenges in learning were balanced by her physical gifts. Ashley found her niche in gymnastics. “She was a phenomenal gymnast,” says Wendy. “She progressed quickly through each level.”
Ashley’s physical health wavered a bit during elementary school, but it wasn’t until fourth grade when she really started to slip. That’s when Ashley’s journey with Juvenile Huntington’s began. “It was a gradual decline, both physically and mentally,” explains Wendy. “Things would be slipping for a while, and then she would plateau and things would feel stable. We would find our new normal just long enough to get comfortable before things would change again.”
Juvenile Huntington’s is a progressive disease with no cure or treatment. “Eventually she will lose all of her skills and functions,” explains Wendy. “We have not told her that, but I think at this point she knows she’s not going to get better.”
Coping with this continual loss can be frustrating, but Ashley does her best to remain positive even as she’s losing her ability to walk, talk, and eat solid food. She now requires special equipment for most activities, and is often strapped into her wheelchair for her own safety.
Faced with these changes and everything else the world was experiencing in 2020, Ashley found solace during ten respite stays at Crescent Cove throughout the year. “We trusted she would be safe there, and we really needed it more than ever before,” says Wendy. “Crescent Cove has allowed us to do things we wouldn’t have been able to do. To be alone as a couple, or with Ashley’s older sister, or even just getting a good night’s sleep. And it’s good for Ashley, too. She’s so social and gets so much joy out of being with others.”
Ashley spends her days at Crescent Cove enjoying music therapy, crafts, boat rides, movies, and of course developing new friendships. “Ashley has a heart of gold,” says Crescent Cove RN Katie Neal. “She is friends with everyone and looks for ways to make others feel special, even if it means letting them win a game of Candy Land. She always includes others and makes everyone laugh through her great sense of humor.”
Ashley’s favorite movie character is a bunny named Judy Hopps from Zootopia, who says we should “make the world a better place.” That’s always been Ashley’s motto, and now it’s Wendy and Tim’s goal to make their daughter’s world the best it can be. “As soon as you find out someone you love has a terminal disease, you have to face death and then go backwards and start living life. So we did that, we faced the prognosis and accepted that she would not live into adulthood, and then started to really enjoy the present and focus on making her childhood amazing.”