By Catherine Lucas
Any child illness is disruptive for a family, but having a child with a rare disease comes with its own set of challenges.
Parents are faced with terrifying and obscure combinations of symptoms, and doctors are often just as mystified when it comes to diagnosing one of the 7,000 diseases designated “rare”.
One of these parents is Rhode Islander Patricia Weltin. She is the mother of two daughters diagnosed with a rare disease known as hypermobile Ehlers-Danlos syndrome, and founder of the advocacy group Rare Disease United.
When a high school student with an art class assignment asked Weltin’s charity if she could paint a boy with osteogenesis imperfecta, a rare bone disease, Weltin saw potential to propagate the idea and connect with audiences in a new way.
Pairing local artists with children known to her through her advocacy work, she created Beyond the Diagnosis, a portrait series that put a young face to a number of these illnesses.
What followed exceeded all of her expectations.
Starting with 17 portraits in the project’s first launch in February, 2015, it has achieved global status with artists and patients from places as far flung as Iraq, Ghana, and Venezuela.
The number of portraits has now reached 100. Demand for the exhibition has exploded and today, whether it’s at a university, government agency, or clinical conference, it is almost permanently on display somewhere in the U.S.
Source: The Lancet Child & Adolescent Health, Volume 2, Issue 10, October 2018, Page 703