More than meets the eye: Exhibit of children's portraits meant to raise awareness of rare diseases

PAWTUCKET — A portrait on the wall at the Creative Commerce Center shows two young girls with curly blonde hair, smiling as they lie side-by-side on a blanket in green grass. 

“They look like they walked off the cover of a magazine,” said Patricia Weltin, who commissioned the portrait, which will hang with dozens of others like it at the Pawtucket gallery through the end of next month.

But there’s something about the girls in the painting that the viewer can’t see.

“These girls are sick,” Weltin said.

The girls depicted in the portrait are Haleigh and Avee Klein, sisters who have Ehlers-Danlos Syndrome, a rare connective-tissue disorder that primarily affects the skin and joints but can also impact other organs and tissues and lead to life-threatening complications.

 “People look at them and think there’s nothing wrong with these kids,” said Weltin, whose two daughters also have the disease. “You don’t have to look ill to be ill.”

That’s one of the messages Weltin hopes to send with portraits like the one of Haleigh and Avee, which is part of her collection of 120 paintings of children with rare diseases.

You can’t tell by looking at them, she said, but children with these diseases, and their families, are suffering. 

“We’re not believed,” she said. “When you have an invisible illness, even if you have a diagnosis, you have to fight to be believed every time you have to go to a doctor.”

Weltin has been commissioning and showing these portraits through her organization, Beyond the Diagnosis, since 2015 to raise awareness about rare diseases, which she said are too often under-researched and not well-understood by the medical community.

A rare disease is defined as a condition that affects fewer than 200,000 people, according to the National Institutes of Health. An estimated 25 to 30 million Americans are living with some form of rare disease, according to the agency.

When Weltin’s daughters — Olivia and Hana (Hana was recently profiled in the Journal after achieving a perfect score on her SAT) — started showing symptoms of their illness, Weltin had to do much of her own research because, she says, doctors misdiagnosed them time and again.

“I said to the doctors, ‘I think she has EDS,'” she said, using an acronym for Ehlers-Danlos Syndrome. “‘Can that be?’ They said, ‘Oh my god, I think she does.’”

Weltin is deeply connected to the rare disease community and often talks with other parents to help them determine what their children’s symptoms mean.

Through Beyond the Diagnosis, Weltin accepts applications from families for their children to be painted, or reaches out to families herself, then pairs them with artists who volunteer their time.

While the colorful paintings of children elicit joy, they also depict a devastating reality, Weltin said. Ten of the children featured in the exhibit have died. 

“It’s heartbreaking,” she said. “I feel like I know these kids. And you feel, in some ways, responsible for them.”

Weltin understands all too well the realities faced each day by children with rare diseases and their families.

“When my kids were diagnosed, the first thing I felt was hopelessness,” she said. “I can’t describe to you how awful this life is … watching your children suffer.”

The portraits will be on display for viewing by appointment through the end of December before heading to their next exhibit at the Broad Institute in Boston. 

Weltin sees the art as a way to raise awareness about rare diseases among members of the wider public who might not know as much about these conditions as they do about breast cancer or diabetes.

“This has started research,” Weltin said of the exhibit. “It’s amazing. It’s done more than we ever imagined it would do. You can not walk through here and not be changed.”

The exhibit is on display at the Creative Commerce Center, 881 Main St., in Pawtucket through the end of December.

To make an appointment to view the gallery, email Weltin at pweltin@beyondthediagnosis.org

Find out more about the exhibit at www.beyondthediagnosis.org

— mlist@providencejournal.com

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