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Changing the reality of Coats' Disease

Doctors at the Wilmer Eye Institute gave Barbi Smole's son a second chance at sight. Now, she's raising funds and awareness to ensure they can help other families battling the rare eye disorder
Posted July 13, 2016
(l-r) Akrit Sodhi, MD, Barbi Smole, and Sean Smole (photo by: Justin Tsucalas) (l-r) Akrit Sodhi, MD, Barbi Smole, and Sean Smole (photo by: Justin Tsucalas)

How do you properly thank the doctors who saved your child's eyesight? If you’re Barbi Smole, you start fundraising.

Smole's son, Sean, came to the Wilmer Eye Institute a little over two years ago suffering from Coats' Disease in his right eye. Coats' is a rare condition in which blood vessels in the retina grow abnormally and can, with time, cause blindness.

James Handa, MD, and Michael Repka, MD, performed a series of laser surgeries to stop the leakage before it could damage Sean's retina and restored his sight to nearly better than normal. Smole felt incredibly grateful for the quality of care Sean received at Hopkins, but also disappointed that research about what causes Coats' hasn’t progressed significantly since her cousin's son received a Coats' diagnosis more than a decade ago. Successful treatment of Coats' is possible when the disease is detected early, but it predominantly affects children who may not — or cannot — tell parents or caregivers that they're struggling to see. Diagnoses may be made too late to pursue successful interventions. Better understanding of how and why the disease develops is the key to increasing early identification.

"Sean won’t be the last child affected by Coats'," Smole recalls thinking at the time. "I said to the family, we can do something about this. We can support Hopkins researchers to help the next person down the road. That's when the drive to start fundraising started."

Over the past two years, the Smoles have raised more than $32,000 to support Wilmer through two annual events and created a strong, global community through a Facebook group for Coats'-affected families. She recently spoke with Rising about her unwavering advocacy for Coats' patients and Wilmer's efforts to advance the study of the disease.

How have you raised the money, and where has it gone?

The first year, we had an event at our house, including cocktails, hors d'oeuvres, and a silent auction. The next year, we brought in local food trucks and a DJ to make it more of a party. Altogether, we've raised more than $32,000, which has supported the Coats' research of Dr. Akrit Sodhi at Wilmer. His research had focused on adults with diabetes who experienced vision loss in a way that’s very similar to Coats' — but he hadn't yet focused on children, specifically.

How are you looking to build on the funds you’ve already raised for his research?

When Sean was diagnosed, I went online to learn more about Coats' and discovered a related foundation in California. They were a great reference for me at the beginning, and after we established our Facebook group, one of its founders, reached out to me. She asked who we were raising money for, and they were really happy to know it was Hopkins. I connected them with Dr. Sodhi and the development staff at Wilmer. Now the foundation is talking with them about how they can support Dr. Sodhi’s work through grants.

You mentioned your Facebook group. Why was it important for you to build a community for Coats' patients and their families that didn’t exist before?

Every parent goes through the same thing when they hear their child has Coats': They're terrified. They have a ton of questions. Now, I'm able to go online and instantly reach out to them and tell them the story of my son, so they can see that even after a Coats' diagnosis, things can turn out well. I've also spoken to many of these parents on the phone; one called me at 3 a.m. because they didn't realize there was a time difference between us. But we talked for an hour. I do it because people need to hear that it's going to be OK.

How is Sean doing now?

His vision has gone from 20/2000 at the start of this treatment to 20/50 in his Coats' eye. We're beyond thrilled by what they've been able to do for him through treatment. We know that we're very lucky, because we intervened very early. But we also know this means there's hope for children with Coats', and maybe a cure down the road. When we started this, I felt like there was no hope, no potential for things to get better for Sean. But now that we've started this movement through research, the reality is changing. There is a strong possibility that things will be better for children with Coats'. It may not be tomorrow, but it will be soon.

Interested in learning more about Sean Smole's treatment at Wilmer? Read the article beginning on Page 12 in the Spring 2016 edition of Sightline magazine.