As a genome scientist I have spent my career working on the human genome. I am also the parent of two young children who were born at 28 weeks (my son) and 30 weeks (my daughter). My daughter spent a month in an intensive care unit while my son was on intensive care for two months. Unfortunately, they both suffered brain damage during birth and have severe cerebral palsy. My daughter also developed a rare and catastrophic form of epilepsy at 8 months, called West syndrome, or infantile spasms. Both of my children have had extensive investigations into their genetic makeup to see if there may be a cause for their challenges, but as yet, nothing has been found. Since then, I have devoted my time and career to understanding more about why our genomes can be responsible for such terrible disorders.

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