As a mother of two children living with a rare disease, Patricia Weltin has dedicated her career to showing the rich, vibrant life those diagnosed with rare conditions can and do have. Her wildly-successful Beyond the Diagnosis project produces portraits of children living with rare diseases in order to put a face to many little-known conditions. The exhibit tours the U.S. with stops at hospitals and other facilities so the medical community can see what living with a rare disease really looks like.
For Weltin, the latest face of inspiration is one she sees every day. Her daughter, Hana, who is living with the rare connective tissue disorder Ehlers-Danlos syndrome, recently scored a perfect 1600 on the SAT college entrance exam.
“I thought it was a mistake,” Weltin told Vita. “It really didn't sink in for probably three weeks before we said, ‘it's not a mistake, this is it.’”
While less than 1% of test takers achieve a perfect score on the test, Hana, who’s 20, did it after missing two years of school. She was bedridden for much of her time away from class and underwent brain surgery to address complications brought on by her disease. The surgery required an arduous recovery period, making her achievement all the more remarkable.
Hana is an example to others living with a rare disease that they need not limit themselves due to the challenges they face, Patricia said.
“I have no doubt that she'll be able to do anything she wants to really,” she added. “I mean, her body's broken, but her mind is not.”
Hana’s dream is to become a doctor and study Ehlers-Danlos syndrome. Due to her condition, a close proximity to her Rhode Island home is a priority in her college choice so she can be close to her doctors and her family. Hana is considering nearby Brown University while also looking at fellow Ivy League institutions Harvard and Columbia.
The school Hana ends up choosing will be one that sees her potential and is willing to provide accommodations so she is able to manage her rare disease and pursue her dreams, said Patricia.
“I think parents just need to keep believing. I think we know our kids and we know what they're capable of and you can't give up on them,” she said.
