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Linden resident fighting ultra-rare neurological disorder | Family leads efforts to raise awareness, funds for research texarkanagazette.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from texarkanagazette.com Daily Mail and Mail on Sunday newspapers.
Marley s family shares story during Rare Disease Week to raise awareness and last updated 2021-02-23 06:05:30-05 GRAND RAPIDS, Mich. â Tuesday marks the start of Rare Disease Week, recognizing the nearly 30 million people in the U.S. who are affected by a rare disease. Marley Berthoud of West Michigan was diagnosed with Bachmann Bupp syndrome. She was the very first human to be given that diagnosis, and since then there are now a few more people worldwide who have been given that diagnosis.â Her mother Kelly had a normal pregnancy, but when Marley was born there were a lot of neurologic deficits that led doctors to take an MRI at her birth. Thatâs when they found a massive brain hemorrhage. After a year and a half, the family had been to multiple doctor appointments trying to find answers when they finally sought out a genetics consult. ....