We also aim to support those with similar conditions. Diagnosed with autism early in life, Kathryn “Katie” May is now 33 years old! Katie lives with her parents, Stu and Debbie May and attends the Developing Potential Habilitation Program in Independence, MO. At the age of 5 months, Katie’s parents observed that she was not meeting the normal infant milestones at which time she was evaluated by several different physicians. She was diagnosed with developmental delays and hypotonia. Katie was not diagnosed with autism and scoliosis until the age of 10. Katie has always been nonverbal. However, she can communicate most of her needs. She does this by facial expressions, pushing something away or turning her head. Katie’s favorite activities include swimming, swinging, riding her tricycle, therapeutic horseback riding and boating. She especially enjoys music, humming songs and dancing. Katie has been very fortunate to have few medical needs and hospital stays until May 2012, when Katie began having swallowing difficulty. A CAT scan revealed a benign hemangioblastoma brain tumor that was pressing on her brain stem causing swallowing and respiratory difficulties, including a collapsed lung. Katie underwent neurosurgery to remove the brain tumor. Her surgery and recovery was so remarkable that the neurosurgeon called her a “miracle.” As a result of the finding of the brain tumor, Katie was clinically diagnosed with Von Hippel-Lindau (VHL) disease. This diagnosis requires yearly preventative screenings to avoid further complications. Following her neurosurgery, she had a setback with her feeding tube that required an emergency abdominal surgery and a lengthy rehab stay. After several weeks of intense therapies, Katie regained her strength and returned home where she is doing very well.
