Kathy and Sara May
Sara May has a rare condition called Cockayne syndrome. At the time she was diagnosed, only 50 other children in the United States had this condition. Cockayne syndrome is an inherited disorder which typically includes growth retardation, abnormal sensitivity to light, a prematurely-aged appearance and developmental delays. Now, at 23 years old, Sara is going through menopause.
Kathy fears that her daughter will pass away before her number ever comes up on the waiting list. When Sara was diagnosed with this syndrome at age 5, Kathy was told by a geneticist that Sara had 10 years to live. Sara has lived 13 years beyond the normal life expectancy of a person with this syndrome. But, it has come with great cost. She lost her hearing, and she is losing her vision and her ability to walk.
While seeking help for her daughter, Kathy attended a “boot camp” for families sponsored by state agencies, advocates, MRA representatives and providers. The purpose of the boot camp was to educate families who were seeking services about the long term care service system. She was told if she would “lock up” Sara in a nursing home or a State School, she would immediately be number one on the waiver. This is not the route they wanted to go. Sara’s choice and desire is to remain in her home and be safe and comfortable for the remainder of her life. She wants to be a part of her community, not separated from it.
Kathy said the biggest dream they have is to have resources in their hometown for people with special needs so they can give back to the community. Sara wants to do something meaningful and be able to come home from that experience and have something to talk about.
Sara has decided she’d like to remain living with her mom, but she wants a normal life in the community. When asked what she would like to do if she had an attendant, Sara laughed and said “Go to a bar.”