Kaydn’s Story


Kaydn was born six weeks early, in May of 2018. He spent his first nine days in the neonatal intensive care unit in Sioux Falls, SD. Despite being born premature, Kaydn left the hospital completely healthy and spent the first six months developing normally, just as a child would. This all changed on December 19th, 2018 with one single photograph.

Kaydn’s mom, Manda, took a flash photo of her son and noticed a golden “glow” in his pupil. She did not know what this glow was but she was concerned. She then sent the photo to several friends and family asking for their advice. Not one person had an explanation for the glow, but each encouraged her to have Kadyn’s eyes checked. The next day she took Kaydn to his pediatrician. Once the pediatrician looked into Kadyn’s eyes, she was also very concerned. She told Manda she was not able to diagnose Kaydn, but that she needed to go see a specialist right away. Since the nearest ophthalmologist was more than two hours away, Manda had taken Kaydn to a local optometrist upon the pediatrician’s request. Here, Kadyn’s eyes were dilated. The doctor looked into Kaydn’s eyes, Manda knew based on her appearance and the look on the optometrist’s face, something was wrong. The optometrist then confirmed that there was a mass in Kadyn’s right eye. She explained that this mass could be very serious and sent Kadyn to the University of Minnesota Children’s Eye Clinic the next day.

There, the family met with a Pediatric Ophthalmologist. After the examination with dilation, the doctor confirmed that Kaydn had a mass in his right eye. But, the doctor was unsure what the mass was. The doctor scheduled an exam under anesthesia for the next day. After the exam, the doctors were not able to tell definitively if Kaydn had Retinoblastoma or Coats’ Disease, or possibly even a combination of both. However, they did tell the family that, regardless of the cause, Kadyn’s condition was very advanced. His retina was completely detached, and he was going to have prolonged future pain that would eventually lead to permanent blindness and removal of his eye at a later age. The only treatment suggested at this time was removal of the eye, called enucleation. With that news, Manda and her husband didn’t hesitate, they knew the removal of his eye was a necessary procedure to have done to keep their son happy and healthy.

One week following the Christmas holiday, with Manda’s parents along for moral and emotional support, Kaydn had the surgery to remove his eye. Manda and her husband had a lot of mixed feelings prior to the surgery but they knew they had to stay strong for their son and knew that he was in good hands. Before the surgery, the doctor came into the pre-op area to do her assessment. She noticed his eye looked bigger than the other and suggested maybe the pressure had gone up since their last visit just a week prior.

In January of 2019, the pathology report came back for Kaydn from Wills Eye Hospital, after the University of Minnesota Children’s Eye Clinic sent his eye to them for a second opinion. They had commented on the report saying, “This is an extremely unusual case.” The family learned that Kaydn did not have Retinoblastoma. He had officially been diagnosed with Coats’ Disease. At this time, Kadyn’s left eye shows no signs of the disease and the specialists do not believe he will have any future issues. But they are urging them to do regular eye exams on the other eye.

Since the operation, Kaydn has been doing very well. He has had multiple eye exams and shows no evidence of this rare disease in his left eye. He is accustomed to his “new normal.” Despite growing up with just one eye, Kaydn is a very energetic two-year-old. He may look different than others, but he is the same. He runs and plays just like any other two-year-old. Kaydn loves to help tell his story. He shows people his “special eye” and then shows them his muscles!

Kaydn and his family’s journey has been a difficult one with many ups and downs, countless tears, frustration, and happiness. Kaydn is a special little boy. At this time, his is the only documented case of Coats’ Disease in his state listed in the Jack McGovern Coats Disease Foundation Coats’ Patient Registry.

Manda and Bryan are very happy that they listened to their inner voices telling them that the glow was more than just a strange flash from the camera. It is a white reflex called Leucocoria that can be an indicator of more than twenty disorders that impact the eye. They are frustrated that the glow and Coats’ Disease don’t get as much attention as other diseases. They have been trying to help spread awareness of “The Glow” and Coats’ Disease. They hope that by sharing their sons’ story they can help spread awareness to other families.