Shortly before Talia Duff of Ipswich, Massachusetts, turned 9, her mother noticed that she was losing mobility. Talia, who has Down syndrome, could no longer use a spoon or give a hug and her arms and legs had become increasingly weak.
Jocelyn Duff, a physician’s assistant, and her husband, John Duff, dean at a community college, took their daughter to the hospital for testing and received devastating news in September 2015: Talia had a rare genetic disease called Charcot-Marie-Tooth Neuropathy Type 4J — a disorder estimated to be shared by only 22 people worldwide. The disease causes profound muscle weakness and eventually affects the capability to breathe.
Jocelyn Duff, a physician’s assistant, and her husband, John Duff, dean at a community college, took their daughter to the hospital for testing and received devastating news in September 2015: Talia had a rare genetic disease called Charcot-Marie-Tooth Neuropathy Type 4J — a disorder estimated to be shared by only 22 people worldwide. The disease causes profound muscle weakness and eventually affects the capability to breathe.
- 6/28/2017
- by Cathy Free
- PEOPLE.com
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