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'It will consume your life': Four families take on rare diseases

By Gina Kolata
New York Times·
16 mins to read
'It will consume your life': Four families take on rare diseases
'It will consume your life': Four families take on rare diseases

Confronted by illnesses that most scientists overlook, these families had to work out their own approaches to find treatments.

Monica Coenraads had a terrible feeling something was wrong with her 14-month-old baby, Chelsea. She had not learned to walk. She had one word, duck, and then lost it.

During a

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