Matthew’s Story

Posted on 2017-04-12
Fall 2013 was a challenging time for 9-year-old Matthew. He was finally having surgery to correct a condition that caused his foot to point inward. This surgery required Matthew to stay home from school for a few months to recover. During those weeks at home, his mother, LeeAnn, took many photos of him indoors, using a flash. Time and again, the photo would come back with a white glow on one of Matthew’s eyes. LeeAnn assumed there was a setting on her camera that was causing the glow. She discussed this white eye glow with her husband, but at the time, neither one of them knew it was a sign of something more. Matthew recovered nicely from his surgery and returned to school at the end of January.
 
Unbeknownst to Matthew’s parents, he had a new set of challenges in the classroom. Matthew had noticed that his vision was failing during his recovery at home. He did not say anything to his parents about it as he felt they were already overwhelmed from his recovery from leg surgery. However, the vision loss bothered him enough that he confided in his best friend, asking him not to tell anyone. Once back in school, Matthew could no longer keep this secret. It was not only difficult to see the board, but the school performed eye screenings on all of the students. Matthew failed the test. The school required him to see a pediatric optometrist. Before the exam, Matthew confessed to his mother that he could not see in one of his eyes. LeeAnn was shocked. There had been no sign that Matthew had any difficulty seeing. Once at the optometrist’s office, the optometrist was equally baffled. After a two-hour exam, the optometrist confirmed what Matthew’s parents now knew–Matthew had very limited vision in his eye. The family was sent to a specialist the very next day. Matthew saw Dr. Leanne Labriola, who diagnosed him with Coats disease.
 
Matthew’s parents were saddened and confused by the diagnosis, as Coats is such a rare disease.When Matthew noticed that they were upset, he consoled them saying, “Mom, if this is the path that God has created for me, I will follow it. I am not sure why God has set me on this path, but it may be to teach others.” And, that is exactly what Matthew and LeeAnn have done. They are both determined to spread awareness of “The Glow” and Coats disease. They realize early diagnosis is very important in every one of the Glow-related conditions. They do not want another family to assume a Glow photo is just an incorrect setting on the camera. 
 
Since his diagnosis, Matthew has been treated by Dr. Olsen at the Children’s Hospital of Pittsburgh (UPMC). He has gone through three laser surgeries and one cryotherapy treatment. His Coats disease has been stable for over a year. Matthew is now 14 years old and an avid baseball player.
 
The year of his diagnosis, Matthew’s brother went to Cooperstown. Frustrated that he could not go along because of his treatments, Matthew vowed to visit someday. Two years later, Matthew fulfilled that promise to himself and pitched at Cooperstown! Matthew does not let his Coats hold him back in anything he does.  
 
Read Jeremiah’s story to learn more about Coats disease.