Braydon and Paisley M, age 13 and 12

Photograph by John Lowry (2023)
Braydon is an astonishing young man. He is pleasant, sweet, and intuitive. When he’s excited about something, he does the “Braydon dance”, and you can’t help but be happy when you see it.
In 2018, Braydon began to have challenges with his vision. Within eight months his vision changed from 20/40 to 20/1200 in one eye and 20/2000 in the other. His vision exams lead to further testing and eventually he was diagnosed with Juvenile Batten disease—a rare neurodegenerative disorder. He still has a bit of peripheral vision. His family is amazed at how he has adapted—using all his other senses including hearing and tactile function to compensate for his vision loss. He comforts his sister when she has anxiety, and responds emotionally to touching music.
Later on, his sister Paisley received the same diagnosis, and it has affected her more quickly. The disease also causes cognitive regression and other symptoms. Paisley, however, is outgoing and social. Her spirit is playful, and she seeks joyfulness, which in turn brings joy to family. Her personality is a blessing. She remains tenacious, persistent, and resilient. Paisley loves to play and dance, and she sings at the top of her lungs. She is always excited to listen to her favorite movies and at quieter times, she enjoys having someone read to her.

“Paisley takes life and grasps it with both hands” says grandmother, Diane. “The way Braydon deals with his life is unbelievable. They are the bravest, most magnificent people.”

Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.