Ultra rare ‘one-in-eight billion’ genetic disease hits 3 Alberta siblings
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Jun 24, 2021
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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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Batten Disease is a rare, terminal neurodegenerative condition that severely impacts children and young people. It’s heartbreaking, and I want to thank the Batten Disease Family Association for their tireless support of families facing this cruel disease. | Ed Davey
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