Thursday, January 9, 2014

The Last Generation - a mother's hope for her daughter

Adrienne Shapiro
Earlier today Sangamo Biosciences announced it had reached a collaborative agreement with Biogen Idec, something that could help speed up development of a cure for sickle cell disease. That can't come soon enough for Adrienne Shapiro, a Patient Advocate and mother of a daughter with sickle cell disease. In this guest blog Adrienne talks about what finding a cure would mean for her, for her daughter, and for everyone else battling this debilitating and deadly disorder. 

Finding this cure would mean that I am the last generation of mothers in my family to spend her adult life keeping her child alive. Watching my bright, beautiful, brave girl as this horrible painful disease ravages her body and the pain medicines impair her mind. Fighting for her while the weight of the psychological and social issues surrounding the treatment of Sickle Cell wears away at her spirit.

Generations
My grandmother told me the story of her eldest and favorite brother. He was smart, strong and bold. As a child he would sometimes complain of pain and would just get weak. Other times he was just a normal happy boy. At fifteen he went off to the College for Negro Boys to study education. He wanted to be a teacher. His health became a problem off and on, but he managed to do well with his studies. During his second year his friends found him dead in his bed. No one knew that he had Sickle Cell disease. My Great-Grandmother grieved over her first born son and said it was not natural for a mother to bury her child.

Moms (an aunt who raised me) had a son named Teddy. He was diagnosed with Sickle Cell shortly after birth. Everyone said it was something that skipped a generation. Teddy received a “bad blood transfusion” when he was three years old. It left him mentally and physically handicapped. Everyone told her to put him in a home and she said "He has a home. With us". Teddy was the oldest child and as the other children were born each was tested for the disease. None of us had the disease and all were told we did not have the trait. Teddy lived to be nearly fifty years old. He always lived at home with Moms and Pops and had very few painful Sickle Cell crises. Moms was convinced that it was because she watched over him so carefully.

Last Generation
When my bright, beautiful girl was born she looked perfect. I did not worry, I had been tested and told that I did not have the trait and you needed two parents with the trait. Her father was Cuban and we didn’t even think Cubans could have Sickle Cell. She was diagnosed at nine months during newborn screening. We all said it could not be possible. We found out that the test we had been given was faulty and I did indeed have the trait. I said my daughter would live with me. She would have the best health care and education because she would be cured in her lifetime.

Stem cell research can make that happen. I will not have to repeat the experience of burying my first born as the generations before me. She can be cured and I can be the last generation of mothers in my family to live with the fear of losing her child to Sickle Cell disease.

Adrienne Shapiro

At the stem cell agency we are funding several research projects looking into developing treatments and even a cure for sickle cell disease.

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