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Living Proof: Terry and Billy Ellsworth - Part 2
Episode 1226th June 2021 • Raising Rare • Raising Rare
00:00:00 00:19:29

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In Part 2 of our discussion with Terri and Billy Ellsworth we talk about the experience of being in a clinical trial for Duchenne Muscular Dystrophy.  We hear from Billy – his memories and his perspective.  It was a chance of a lifetime, but it was scary for 10-year-old.  Billy talks about bonding with the other boys in the trial. 

We also talk to Billy about his interests and what he has done since the clinical trial.  He has been fortunate because the exon-skipping drug worked well for him.  Even though he still gets weekly treatments, he is just a regular young guy.  However, he has an appreciation for the everyday things he can do without assistance. 

Terry also shares how she found herself doing more and more on the advocacy front.