Christina says that during the first years of Jake’s life, he was very sensitive to light. She did not think much of this sensitivity in her son as he was very young and she thought that light sensitivity would be normal. When Jake was about 3 years old though she began to notice his sensitivity becoming much more pronounced and that he was rubbing his left eye a lot. He was not able to go outside in the bright sunlight without wearing his sunglasses and even then he was uncomfortable. Concerned, Christina took him to a pediatric ophthalmologist for a thorough vision check. The ophthalmologist said that Jake’s vision was great! She did not see anything of concern and diagnosed Jake only with photosensitivity.
Jake continued to have extreme sensitivity to sunlight and flash photography.
Christina says that since the complete ophthalmological exam and all of his vision screenings at school and during his well visits were normal, they were not overly concerned and just helped him manage life with photosensitivity.
In January of 2018, when Jake was six, Mark and Christina took him to an optometrist for just a routine eye exam. Upon examination, the optometrist thought Jake might be developing a lazy eye and prescribed glasses. He asked that they return in 30 days to check his progress and possibly begin patching therapy, if necessary. When they returned for the follow-up appointment, the vision screening was not at all what anyone expected. Jake’s eyesight was better than his last exam. The optometrist decided to take some photographs of Jake’s eye. It was evident in these photographs that something wrong. While the optometrist suspected Coats’ Disease, the optometrist could not give them a diagnosis and referred them to an ophthalmologist in Green Bay, Wisconsin.
It was at this visit that Jake was diagnosed with Coats’ Disease.
Coats’ is a rare condition in which there is abnormal development of blood vessels in the retina. These vessels leak fluid in the eye potentially causing the complete or partial detachment of the retina and vision loss. Coats’ is treatable, but not curable. Because the condition is rare, there are not many physicians who treat Coats’ Disease for children under anesthesia in Wisconsin. They were only able to locate two physicians, one in Milwaukee and one in Madison. They traveled to Milwaukee later that week and their ophthalmologist confirmed the Coats’ Disease diagnosis. They felt very lucky that he was diagnosed before Jake experienced retinal detachment. Since being diagnosed, Jake has been treated via two procedures consisting of laser treatment and Avastin injections.
After his diagnosis, they began research to find as much information as they could about Coats’. They learned that “the Glow” (Leucokoria) may show up in the pupil of the eye when flash photos are taken of children who have Coats’ Disease. It was not until after Jake’s diagnosis that Christina was able to see “the Glow” in his photos. Christina found the Know The Glow campaign on Facebook. She reached out for support and says that the Know The Glow organization and Curing Coats’ Fundraiser (Barbara Sorenson-Smole) are the two groups which helped the most in trying to answer questions and find the best path to care.