In November 2021, we noticed our son Marcello’s left eye drift to the side. We reached out to our pediatrician to schedule an exam. During this time, covid omicron had spread to its highest way, and we couldn’t get an appointment until January 2022. We didn’t think it would be severe during that wait. My husband had amblyopia, a lazy eye when he was a kid, and he had to wear an eye patch and then eventually wear glasses. We assumed Marcello had the same condition. However, after a referral to the Pediatrician Optometrist and a 45-minute exam, Dr. Buu found some yellow spots in the back of Marcello’s left eye. She recommended another referral but this time to an Ophthalmologist and the Vitero-Retina team. She asked if I could stay and wait for the Ophthalmologist, Dr. Kevin Merrill, to arrive or return another day. I decided to stay, and I’m so glad I did because time was of the essence. After Dr. Merrill examed Marcello’s eye, he suspected the yellow spots and the cause of drift were due to Coats’ disease. 

Dr. Merrill explained Coats’s disease to me, a rare disorder characterized by abnormal development of blood vessels in the retina. The retina is a nerve-rich tissue lining the back of the eye that transmits light images to the brain, which allows a person to see. Therefore, Marcello could experience loss of vision in that left eye due to the changes in the retina and, depending on the progression of the disease, retinal detachment. After hearing the news, I immediately froze. I couldn’t understand what he told me, my little boy with a rare eye disease and no cure! My son could go blind in his left eye?! I had to ask Dr. Merrill to repeat the information to me.

Since Marcello was only 20 months old then, he wouldn’t cooperate for a complete exam unless he was asleep. We quickly scheduled surgery for the following week, where Dr. Merrill and Dr. Lewis could examine Marcello’s eye, confirm it was Coats disease, and start immediate laser treatment. The yellow spots Dr. Buu found in Marcello’s left eye reflected the liquid leaking from the blood vessels in his retina. This liquid had already started to crystalize, but thankfully we caught it just in time before those crystals bonded. If the crystals had connected, it would be too late to prevent retinal detachment. After Dr. Merrill and Dr. Lewis confirmed Coats' disease, they started the first laser treatment. The laser treatment would freeze the liquid and crystals, preventing them from bonding. Since Marcello’s eyes were still developing, the hope was for the liquid and crystals to move away from his retina and reabsorbed within the white part of his eyes. 

A year later, after four laser treatments, and a continuous eye patch for a few hours a day, Marcello’s vision in his left eye went from 25% to 98%. The crystals and liquid no longer blocked his retina. It was the best news we had received. Marcello continues to wear an eye patch for a few hours daily; we aim for 20-25 hours per week. We continue monitoring his vision and attending 3-4 monthly check-up appointments. While currently, there’s no cure for Coats’ disease; we continue to have faith that he won’t need any further laser procedures. Throughout this journey, I struggled to find a bilingual book that empowered Marcello to wear an eye patch, so I did what mothers do best, I created my own. El Pirata y su Parche Magico/The Pirate and his Magical Eye Patch will be published this Fall. 

As parents, our journey with Coats’ has been overwhelming, scary, and emotional. However, we are incredibly thankful for the care and support from Dr. Buu, Dr. Merrill, and Dr. Lewis from Kaiser Permanente as well as a huge thank you to the Jack McGovern’s Coats Disease Foundation, who have provided us with many resources and connected us with other Coats families. 

Best,

Paty Millán Montesinos

Mama of a Coats' Warrior