ROUND ROCK, Texas — When Holly and Todd McDonald saw the portrait of their daughter Cora at a traveling art exhibit highlighting rare disorders and diseases, they felt it brought back a little piece of her.
“Every one of the paintings has a story behind it,” Todd said. “It’s not just a snapshot. It’s a look into the life of these kids and their families and what they’re going through.”
The Beyond the Diagnosis art exhibit at Texas State University’s campus in Round Rock highlights various rare diseases. Each child’s portrait represents a rare disorder. Artists from across the nation donate their time to paint these portraits, with hopes of putting a face to these diagnoses.
“It’s terribly meaningful,” Holly said.
Cora died at age three from Tay-Sachs disease, a rare, inherited condition that affects the nerve cells.
She was diagnosed at 10-and-a-half months old and there is currently no cure for the disease or therapies to slow the progression, according to the National Center for Advancing Translational Sciences.
“It’s a beautiful way to represent the orphan diseases and diseases people don’t normally hear of in a way that’s approachable,” Todd said.
Speaking from experience, the McDonalds want families to know the importance of broad genetic testing.
“So many of these diseases can be prevented if you know you’re a carrier,” Holly said. “For Tay-Sachs, it’s a recessive genetic disease and my husband and I are both carriers, but we didn’t know that when we were family planning. Now, genetic screening or testing is much more affordable and so if we knew that we were carriers, we would’ve planned our family very, very differently. We would never have put Cora through living and then dying.”
The nonprofit U.R. Our Hope partnered with Texas State University’s Department of Physical Therapy to bring the exhibit to Texas.
“I think it makes it powerful,” Mary Elizabeth Parker, medical liaison for U.R. Our Hope and clinical associate professor of physical therapy at Texas State University, said. “I think they see that there are faces here. It is not just a number or a statistic. It’s a real person and I think that brings it home to people and says, ‘hey, I want to do something to support this.’”
Both groups also want the portraits to spark interest in treatment and research.
“We need to encourage the pharmaceutical companies to pursue these medications,” Parker said.
“There are medications out there that are treating some of these rare diseases – spinal muscle atrophy, a lot of the lysosomal disorders – but it’s [about] getting funding and pushing it forward.”
According to The EveryLife Foundation for Rare Diseases, there are 7,000 rare diseases affecting one in 10 Americans and 95 percent of them don’t have FDA approved treatments. The organization’s board chair testified in front of a U.S. Senate Subcommittee meeting this week and advocated for expediting treatments to help rare disease patients.
Holly, who also serves on the board of the Cure Tay-Sachs Foundation, says there’s an educational component to sharing Cora’s story.
“You can test for about 200 diseases for just a few hundred dollars,” she said. “It might seem like a lot of money for a family that’s just starting out, but I can guarantee you it’s a lot less expensive financially, emotionally and physically to be tested. I mean, my daughter died in my arms. There’s a lot of emotional expense that goes along with that.”
Artists say they’ve gained knowledge in the process of painting these portraits.
“A lot of these diseases, I’ve never heard of,” artist Robert Hurst said.
Hurst, who has painted two portraits for Beyond the Diagnosis in the past, said it was a no-brainer to volunteer his talents for this cause.
“There is a lot of sadness and a lot of fighting in these families – what they have to go through to persist and to make people realize what’s happening to their child,” he said. “I’ve become friends with these families so I see what they have to go through. They post pictures of their child and the bureaucracy they have to go through – the fight they have to go through every single day with their child.”
The Beyond the Diagnosis art exhibit will be at Texas State University’s campus in Round Rock until Nov. 9. You can find a list of the other exhibition portraits here.