Dezmond’s Glow Story

Diagnosis: Familial Exudative Vitreoretinopathy (FEVR)

Emily started to notice something may be wrong with her son just weeks after his birth. Dezmond “Dez” was only six weeks old when they noticed both of his eyes were shaking continuously. Alarmed, Emily took him to see his pediatrician. His pediatrician referred them to a pediatric optometrist. Where they were told that Dez may have water on his brain and needed an immediate MRI. To the family’s relief, the MRI came back perfectly fine and in the following months the shaking subsided on its own in his eyes.

Emily was never given an answer for the shaking which did not sit well with her. She brought Dez back to see an ophthalmologist every six months for a well check just to make sure no other issues developed. For almost three years, Dez checked out perfectly fine at each of these ophthalmology visits. However, when Dezmond was three years old his routine exam was not all well. The doctor told Emily that the back of his eye was abnormal. He couldn’t tell them what was wrong or what he possible thought it might be. So, they were then referred to a retina specialist. At his first appointment to meet the doctor, he looked at Dez’s eyes and the symptoms he kept talking about sounded like Coats disease. A month later the specialist did an exam under anesthesia and told Emily that he believed Dezmond did not have Coats but Familial Exudative Vitreoretinopathy (FEVR). FEVR, is a rare, genetic eye disorder leading to vision impairment. It is a progressive disease characterized by abnormal development of retinal blood vessels. Emily was sent to yet another specialist who confirmed this diagnosis. By this time, Dezmond had scar tissue built up behind his left eye that caused blurry central vision and lessened his peripheral vision.

Dez is in patching therapy now to try and regain some of this vision loss. The doctors believe the disease is currently in an in-active state. Despite the genetic component of this disease, Emily is not aware of anyone in her family or her husband’s family that has been diagnosed with FEVR. Dezmond will be watched every 6 months to make sure the disease remains in-active. Dezmond is a very active, happy 3 year old boy. He loves to play with his older sister, he loves anything that has to do with cars and is excited to start preschool. Emily is very glad that she listed to her mother’s intuition and kept searching until she was given an explanation for the initial shaking of his eyes. She hopes by sharing her story she will help others in similar situations.January 25, 2019 Update:Dezmond had a recent exam to check the progress of his condition. Emily is very happy to report that Dezmond’s condition continues to be stable without any blood vessels leaking. There has been no change in the pictures taken back in November 2017 compared to pictures taken in January of this year. Going forward he will no longer need to have exams at the hospital under anesthesia.   They are feeling very positive about these most recent results.