Diagnosis: Coats’ Disease
It all started back in 2004, when my son Diaz was 4 years old. He was playing with his cousins at my sister’s house and my sister noticed that he was squinting. I didn’t think much about it and scheduled an appointment at the ophthalmologist the following week. During that week he kept on squinting and I noticed a Glow in his left eye just looking at him in certain lighting. That is when I thought that there may be something serious happening with his vision. I was very concerned.
We went to the appointment and as soon as the doctor sat him down and turned off the lights, I knew immediately that something was wrong. The doctor quickly turned the lights back on and told me to take him straight to the hospital. Diaz was blind in his left eye.
We drove straight to the hospital and several tests were quickly administered. Ultrasounds, MRI’s, CT scans, yet none of the doctors knew what was wrong with his eye.
The following week the doctor suggested that we put Diaz to sleep so he could see the back of his eye better. This is an EUA, or an exam under anesthesia. Just a few minutes after that exam, the doctor called me to tell me that Diaz probably had Retinoblastoma, cancer of the eye. However, he was not 100% sure of this diagnosis. The not-knowing was devastating!
Diaz underwent tests and examinations from August until December of that year. Finally a doctor suggested we fly to Moorfields Hospital in London (we live in Malta). After MRIs and CT Scans at this hospital we were told the devastating news that there was a small tumor right above his left eye in his frontal lobe.
After five months we were finally told by Moorfields that Diaz had Stage 5 Coats’ disease. Apparently no one has Coats’ disease where we live in Malta, Diaz is the first case.
Diaz is now ten years old. We still have to go for MRIs and CT scans just to make sure that this tumor stays the same size. He often has severe headaches which are probably caused by this small tumor. Overall, he is doing very well with just having vision in one eye.
I want to share my story to help spread awareness of the Glow. I want other families to understand that this sign in their flash photography can mean so much more. I am very grateful that even though I was not aware of “the Glow”, I knew to get him the care he needed.
Update:
KTG recently spoke with Diaz’ mom, Tammy, to get an update on how things are going with him in his home of Malta. Diaz has grown so much since we last spoke with the family 10 years ago! He is now nearly thirteen years old and is a year away from High School! While he still has some headaches, we were happy to learn that his Coats’ Disease and tumor have remained stable. Diaz is checked every six months to determine the status of his Coats’. He also has an annual MRI to check the status of the small tumor above his Coats’ eye. While Diaz has no vision in his affected eye, he is not letting anything get in his way. He loves to play football (soccer) and has just been invited to join the team again this year. Despite how far he has come, Diaz still remembers his trips to London for evaluations and even keeps his Coats’ Monkey as a reminder of the early days of his diagnosis. And after all of these years, Diaz remains the only case of Coats’ Disease in his country. He is grateful that his mother followed her instincts to help him find his diagnosis in time! He is sure to be a great example to others of how to live your best life with monocular vision!
