May the fourth be with you!
This week we’re spotlighting four patient stories: one about a father whose daughter has Sanfilippo syndrome, one about losing your spouse to CF, the origin story of the Jedi Tedi nonprofit, and the first part of the “Labeled Disabled” series.
Sit back and enjoy this week’s Editor’s Choice.
A Father Shares the Emotional Reality of Raising a Child with Sanfilippo Syndrome
Terrence Merrill explains why he loves this photo of his daughter, and why it can still be painful for him to look at.
Read his account here.
Navigating the Loss of Your Spouse from Cystic Fibrosis
Jesse stood by his wife, Bea, in sickness and in health. Ultimately, CF took Bea away from him, and now he has started a foundation in her honor.
Read about it here.
Mother of a Boy With Complex Regional Pain Syndrome Starts Nonprofit
After Jed’s incredible recovery from CRPS, he and his family wanted to give back. They created toys called Jedi Tedis that go towards a good cause.
Read about it here.
Labeled Disabled Part One: Working with Acromegaly
PW contributor Rebekah Palmer is back, sharing a series of stories that guide the way through different disabilities. In this article, she shares the challenges one woman with acromegaly faced in her professional life.
Learn more here.
