A new children's book is helping families talk about rare, fatal Batten disease
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At age seven, Jennifer’s son Michael started showing symptoms of a rare and fatal nervous system disorder called Batten disease. From this moment on, Jennifer took on the role of his full-time caregiver. Today, Jennifer gets support from many different people in her life, including a volunteer caregiver named Liz. Due to COVID-19 restrictions, the two actually have never met in person. Instead, they communicate by phone and together they are working on writing a legacy project to honour the life
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