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Ellen Cook loved nursing. For more than 20 years, she worked as a registered nurse in obstetrics. Although she sometimes encountered difficult cases, the nursery was usually a joyous place and going to work was a pleasure. 
But when Ellen informed the hospital in 1993 that she had been declared legally blind due to retinitis pigmentosa, the hospital took swift action and forced Ellen to go out on permanent disability. Ellen wanted to fight back, but attorneys cautioned her that she could end up with nothing, and Ellen realized she had a daughter to consider. Reluctantly, she left the profession she loved. The Cook family has a long history with retinitis pigmentosa (RP), a disease that progressively steals peripheral vision and can lead to blindness. Ellen's grandmother and mother had the disease, and she recently learned that her 100 year-old uncle, who was misdiagnosed with glaucoma years ago, actually has RP. Ellen was diagnosed with RP when she was just four years old. Although she says she has never fully accepted the disease, she learned to live with its challenges. Ellen went on to nursing school, got married, and had a daughter, Jamie, 18 years ago. When Jamie was around four, Ellen and her husband Glen noticed that their daughter had trouble seeing at night and was bumping into things-the classic, early signs of RP. Although Ellen understood that there was a 50-50 chance that her daughter could be affected by the disease, she hoped and prayed that her daughter would not end up with the same fate. The doctor confirmed Ellen's worst fears. Jamie had retinitis pigmentosa. Ellen sunk into a deep depression, but with the help and support of Glen, she eventually learned to cope. Ellen volunteered at her daughter's school, tutored, served on many board of education committees, and worked with a foundation that provided scholarships for underprivileged children. Ellen also volunteered for the Foundation Fighting Blindness' Maryland chapter, and participated in FFB's research studies at Johns Hopkins and Massachusetts Eye and Ear Infirmary to help find a cure. Jamie also kept Ellen busy. Jamie was a very active, bright girl and from a very young age loved photography, often playing with her grandmother's Brownie cameras. It was no surprise to Ellen when Jamie decided to go to college at the Maryland Institute College of Art to study photography. "I know it seems like a strange profession for someone with a vision problem," says Ellen, "but I have always encouraged Jamie to follow her heart. And photography is what she loves." Thankfully Jamie's vision loss has thus far progressed slowly. After graduation, she hopes to work with children and adults using photography in vision therapy--a type of physical therapy for the eyes and brain. "I try to be very positive about having RP," says Jamie. "You can't worry about what tomorrow might bring, you have to live life to the fullest today." Though Ellen was forced to cut her career short because of RP, she is hopeful that her daughter's fate will be different. "Thanks to FFB, I have hope that there will be a cure in time for Jamie, and that she will be able to spend her life doing what she loves." |
