Stanley’s Glow Story

Diagnosis: FEVR

Stanley was born on May 15, 2014.  He was a very healthy little boy, but had some “quirky” behaviors that meant nothing at the time to his mother, Jessica.  But looking back, Jessica realizes these may have been signs of the vision issues that were later discovered. Jessica remembers nicknaming him “Mole,” as he kept his eyes scrunched shut all the time.  He hated the flash on the camera and jumped at the smallest of noise.

The day Stanley and Jessica first came home from the hospital, Jessica, like most new moms, took many photos and snuggled up with her son.  She looked deeply into his beautiful eyes for the first time.  It was that day that she first noticed something strange—an orange prism floating in this eye.  At first she thought something had dropped in there, but as she looked closer, she saw it was actually within the pupil of his eye.  In a panic, she brought her mother and partner in, and they too saw this orange dot.   Jessica immediately bundled Stanley up and rushed him to an urgent care facility.

The urgent care providers were wonderful.  They checked Stanley, but found nothing wrong.  In retrospect, Jessica wished she had asked them to look at the photos she had taken, but at the time it didn’t cross her mind.  She was told her baby’s eyes were perfect, so she tried to laugh it off and go home.

But, the diagnosis didn’t sit right with her.  She kept seeing the orange prism, and each time she would become sick with fear.  Over the next six days, she told all the midwives that visited her.  Everyone checked him out and reassured her that all was fine, but if she was concerned she should see her general practitioner.  Jessica knew she could not ignore her mother’s intuition that something was wrong.

By this time, Jessica noticed more changes.  Not only was she seeing the orange spot, but there was also cloudiness to his eye, and the eye itself looked smaller.  She wondered why others were not seeing what she saw when she looked at him.  She was determined to capture his peculiarities in a photo.  So she grabbed her camera and set about capturing it in a photo.  And she did.

When Stanley was only 12 days old, Jessica brought him and that photo to his doctor.  At first, the doctor told Jessica not to worry, that it was only his red eye reflex that she was seeing.  However, once she showed the photo, the color drained from the doctor’s face.  She told Jessica that she was absolutely correct.  There was an issue with Stanley’s vision.

The next morning Jessica took Stanley to an emergency eye appointment at Frimley Park Hospital outside London.  After several hours, she was told that Stanley was blind in one eye but that she needed to take him to another hospital for further diagnosis.  The next day she received a call from Royal London Hospital.  She was told that Stanley had Retinoblastoma. She made an appointment for the following week.

After what was a very long and trying week, Jessica took Stanley back to Royal London.  Under anesthesia, the doctors further examined Stanley.   The staff at Royal London was wonderful, very informative and comforting.  After a few hours, the doctor told Jessica that he had good and bad news.  The good news is that it was not cancer.  What Stanley has is not life threatening.  The bad news is that it is a very rare, progressive condition.  He was not an expert on the condition and she would need to take him to Moorfields Eye Hospital for further diagnosis and treatment.

Moorfields confirmed Stanley had had FEVR (Familial exudative vitreoretinopathy).  He had been born with this disease.  His bad eye was short and had not formed properly, and the blood vessels had filled the eye.  He had a cataract as well.  His other eye also had the disease, but only in the peripheral, so his central vision was fine.

Jessica used the power of the Internet to connect and reach out.  She set up a Facebook page called Stanley’s Story to blog about their journey in hopes to help other who may find themselves on a similar path.  In the process, she connected with many other families who have also been diagnosed with FEVR.  They have become “family” and are a huge support for each other.

Stanley is now 18 months old.  He has been under anesthesia five times and has had one laser treatment.  He is currently stable.  Stanley is an adorable, active, loving little boy.  Jessica will continue to listen to her “mother’s intuition” and make sure he is receiving the care he needs to remain stable with his disease.