In 2013, soon after his 5th birthday, Sean Smole went to his local ophthalmologist for a regular eye exam, and the doctor found nothing amiss. Just ten months later, he was blind in his right eye and diagnosed with Coats’ disease, a rare eye disease in which blood vessels in the retina leak blood and fluid into and behind the retina, often leading to blindness.
After being told there was no rush to treatment, Sean’s mother turned to the Wilmer Eye Institute, Johns Hopkins Medicine, for a second opinion. Sean was placed in the care of ophthalmologists James Handa, M.D., and Michael Repka, M.D. Within days, Sean was seen by Dr. Handa, who scheduled Sean for surgery the next day.
Over eight months, Dr. Handa performed seven surgeries, and Dr. Repka monitored him for the common side effects of amblyopia and strabismus, commonly known as lazy eye and wandering eye. In addition, Sean’s Wilmer care team conducted a series of procedures to regain some of his eyesight. As a result, Sean’s eye is now stable, and his eyesight has gone from 20/2000 to 20/70! This is an extraordinary outcome, a reflection of the phenomenal strength of the Wilmer Eye Institute.
The Smole Family was no stranger to Coats’ disease. A family member had suffered a similar fate ten years earlier. The Smole's were disheartened to learn that the treatments, drugs, and alternatives for Coats’ sufferers had not changed in the intervening decade.
The Smole's are passionate about making Coats’ disease easier to handle for the next family. And that is how the Curing Coats' Fundraiser was born! Since 2014, they have raised more than $175,000 to support Coats’ disease research conducted at Wilmer by Akrit Sodhi, M.D., Ph.D.
Coats’ disease is rare and, therefore, little studied, but that’s where you can make a difference through the Curing Coats’ Fundraiser. By donating and spreading the word, you help Dr. Sodhi lead the way in discovering the causes of Coats’ disease and develop research-based treatments and interventions to improve patient care.
The 2021 Curing Coats' Fundraiser event will be held in person on Saturday, September 25, in Columbia, MD. For more event details, please visit https://www.curingcoatsfundraiser.com/.
Whether you can attend in person or will be supporting from afar, every donation makes a difference in our quest to cure Coats' disease!