Andy K.
Illinois
5 Years Old
Diagnosis: Batten Disease and Sanfilippo Syndrome
Theme - Dragons of Yore
In September 2023, Andy was diagnosed with two different, both highly rare neurodegenerative genetic conditions, Batten Disease and Sanfilippo Syndrome. His doctors believe he is the only person to ever be documented with both conditions simultaneously. Both of these diagnoses are terminal.
As both conditions are neurodegenerative, they have already caused him to lose significant skills and mobility in a short amount of time. Despite the challenges, his family is working to manage his symptoms and provide him with the highest quality of life by surrounding Andy with love, compassion, and the best possible medical care available.
Andy is now five years old. Over the past two years, as he has continued to grow, his condition has progressed. Andy is now deaf, blind, non verbal, and non ambulatory. He is confined to a wheelchair and fed through a G-tube. He’s had frequent seizures that require hospital stays. His muscles are weakening, making it harder for him to independently support his head and body and has trouble with simple things like coughing. This makes daily life an intensive routine of medications, therapies, and treatments, all aimed at keeping him as comfortable as possible.
