Diagnosis: Coats’ Disease
Samantha and her husband Luis decided to take their young family on a trip last May.
Their youngest child, Izayah, was almost 1 1/2 years old. Samantha took many photos of her children and proudly shared them on Instagram and Facebook. Shortly after posting she received a message from her niece saying that she was worried about Izayah as she had noticed “the Glow” in the pupil of his eye in several of the photos. She believed that “the Glow” could be the sign of eye disease.
Samantha listened to her niece but did not share her concern about “the Glow.”
She assumed it was just a reflection from the camera. However, a few months later Samantha was once again alerted to Izayah’s Glow. She had taken him to a new daycare center where part of the admission process was an eye exam. Here, they too noticed that Izayah displayed “leukokoria,” the medical name for “the Glow” in his pupil. Leukokria is a yellow / gold reflection. They advised Samantha to take Izayah in for an eye exam before he could be enrolled. Now Samantha was concerned.
She took Izayah to a family ophthalmologist for a thorough exam. Almost immediately after looking at Izayah with his eyes dilated, the doctor told Samantha that he had a tumor behind his eye.
He called another doctor from the office into the room to confirm the diagnosis. Samantha was told that Izayah had Retinoblastoma, cancer of the retina. The doctor explained that Izayah’s tumor had already wrapped around his optic nerve and his retina was detached. He needed to start treatment very quickly to save any remaining vision, and possibly his life.
Samantha was overwhelmed. She could not believe what she was hearing. She took Izayah to Children’s Hospital of Pittsburg the very next morning. Here they performed an exam under anesthesia and confirmed Izayah’s Retinoblastoma diagnosis. With this confirmation, her insurance allowed Samantha to take Izayah to the cancer center of her choice. Two days later, the family was on the road to Memorial Sloan Kettering Cancer Center.
The day after they arrived at Memorial Sloan Kettering Cancer Center, Izayah had an operation to remove his tumor.
After the procedure, they were told that Izayah’s tumor was not actually Retinoblastoma. The tumor was benign! He did not have cancer. However, the tumor had put so much pressure on the vein in his eye that the vein had ruptured and the optic nerve was exposed. He was now diagnosed with Coats’ Disease.
The most common treatment for Coats’ Disease is laser therapy in which the leaking vessels behind the eye are cauterized. Izayah underwent 8 laser surgeries. However, the cauterization was not holding and the vessels continued to leak. They suggested that they try Avastin injections. The first injection proved to be successful in stopping the leaking behind the eye, but the side effects were difficult. Izayah is continuing with Avastin injections and is hopeful they will prove successful in managing his Costs’ Disease.
Meanwhile, Samantha says there are several other issues going on right now with Izayah.
He has lost much of his hair and has frequent, debilitating headaches. He has a very high platelet count that cannot be explained, and an extra valve in his right lung that has been diagnosed as a pulmonary malformation. Izayah was also diagnosed with the LTBP2 mutation. Samantha says that Izayah is a “big puzzle” that the doctors are working hard to figure out.
To manage all of this they need to fly to New York’s Memorial Sloan Kettering Cancer Center from New Castle, Pennsylvania every single month. She stays there for 4 – 5 days each visit. Every 3 months, they also fly to Children’s Hospital of Philadelphia to monitor his lung disorder. Luckily the family has received help from PALS (Patient AirLift Services) for their air and ground transportation and are able to stay at the Ronald McDonald house during his treatment. Even with this help, Izayah’s treatment regimen has been financially straining.
With no real end in sight, they have decided to set up a go fund me page: https://www.gofundme.com/25vjby8g?sharetype=teams&member=436140&rcid=r01-155034575578-15064cf474464c5d&pc=ot_co_campmgmt_w
Looking back, Samantha is very grateful to her niece that she informed her of “the Glow” and equally grateful that the day care center informed her as well. She wishes she had known the severity of what “the Glow” could indicate. She hopes by sharing her story other families will recognize this silent sign and get their children the care they need.