Down, but not Out

Remember watching Lorenzo’s Oil in 5th grade? Well Lorenzo’s father (who discovered a treatment for his son’s degenerative condition), it turns out, has a kindred spirit. Enter, Alberto Costa. When Costa’s daughter Tyche was born with Down Syndrome, he launched himself into a new career looking for a treatment. Unlike Lorenzo’s father, Costa has a slight advantage in the research department – he’s already a physician and neuroscientist.

“From [her birth], we bonded immediately,” he told me during one of our many talks over the last year. “All I could think is, She’s my baby, she’s a lovely girl and what can I do to help her? Obviously I was a physician and a neuroscientist who studies the brain. Here was this new life in front of me and holding my finger and looking straight in my eyes. How could I not think in terms of helping that kid?”

Costa fears that with the advent of new first trimester blood tests for Down Syndrome, children with the disorder will disappear so quickly that the research for those who remain won’t be conducted. It’s already become more difficult to secure funding.

“It’s like we’re in a race against the people who are promoting those early screening methods,” Costa, who is 48, told me. “These tests are going to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.”

Costa is searching for ways to enhance cognitive functioning in people with Down Syndrome, who already have a range of abilities. The secret might be memantine (an Alzheimer’s drug) which has improved memory in mice and is undergoing a human trial. Whether or not Down Syndrome should be treated as an “illness” to be cured, or recognized as a difference, remains debated by the community.

NYT Magazine

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Filed under Chronic illness, Ethics, Love, Neuroscience, Research

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