Meet Kayla, a blonde haired, blue-eyed little girl with a gigantic smile, a tender heart and a disorder so rare that she is the only child exactly like her in the entire world with her particular form of the disorder. This rare nerve disorder is called Hereditary Sensory Autonomic Neuropathy (HSAN). Her body does not signal her brain to regulate her body temperature and she cannot feel pain unless it is extremely intense.
Most recently, Kayla was diagnosed with another rare problem completely unrelated to her HSAN. In March 2006, after over a year of severe headaches, doctors found a malformation in the lower portion of Kayla’s brain. As a result, her brain was growing into her spinal column and to avoid long-term damage and paralysis in September of 2006, Kayla had brain decompression surgery.
She will never be able to play sports, run at recess, or participate in most other normal childhood activities. But, she is surrounded by a loving family and supportive network of friends who always remind her of the things she CAN do. This is her story…