Happy Father’s Day weekend!
While Father’s Day can be complicated in a rare family, rare parents deserve a round of applause. This week we have a Father’s Day tribute from 16-year-old Rebecca, republished from Miracle Flights. We also have a fundraiser for a mom, who has devoted her life to caring for two children with rare diseases, and her husband who recently passed away. Last but not least, we have a story from a POTS patient-turned-advocate, and a three part story from a woman battling with multiple diagnoses.
Sit back and enjoy this week’s Editor’s Choice.
A Father’s Day Tribute from a Miracle Flights Sibling
What makes a dad great? Rebecca, whose sister faces a rare form of epilepsy, has shared her thoughts on the question.
Check it out here.
Meet the Mom Fundraising for her Two Adult Children with Rare Diseases
You’ll be blown away by Gynti “Sweet Mama Goose” Pinon, who exhibits devotion and compassion for her two rare children and her late husband.
Read about it here.
Dysautonomia and POTS: A Patient Story
It seemed like PW Contributor Jenn’s life was all falling into place, when she started experiencing severe health problems. After searching for her diagnosis, she started advocating so that the next “her” would have an easier time finding treatment.
Read about it here.
The Lady with The Purple Cane: Part One of Joanie’s Patient Story
PW Contributor Joanie walks us through an honest telling of her complicated medical history in three parts.
Check out her story here, here, and here.
