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.

Stanley’s Glow Story Update:

All of us at Know the Glow loved having the opportunity to catch up with Jess Portch and hear about how quickly her son Stan is growing up! We were inspired at how amazing Stan is with his determination and positive outlook on life. It has been five years since Megan and the team at KTG last spoke with Stanley’s family outside of London. Over the years his story always resonated with us due to the tenacity and determination shown by Stanley’s parents to uncover his diagnosis

When Stan was just two weeks old, Jess was able to capture an orange glow she was seeing in her two week old son’s photo. Stan was diagnosed with FEVR and treated as an urgent case thanks also to the perseverance of the young doctor who was aware of  the dangers that the glow could indicate.  

Happily that turbulent time was eight years ago and Stan has grown into a fine young boy!  He is not only determined but delighted to have met and befriended a few other young kids in the UK who are walking down a similar path with their FEVR diagnosis. This group of friends  have each found ways to empower other children who are just now learning to live with their visual impairments. Stan is determined to help others through sharing their medical stories as well as the unique and creative ways they have turned their challenges into opportunities to help others.  

Stan’s mother is also an active advocate. She is often found presenting talks with midwives or other personnel at her local hospital, sharing with them the importance of listening to parents and their intuitions regarding their children’s health.  

Like Stan, Jess has also found tremendous support in the FEVR community. The FEVER mothers that she has befriended are  supportive, hopeful and determined  to findresources to help guide each other through life’s unique challenges.  

A visionary, Jess asked about becoming an ambassador for KTG five years ago, long before KTG had launched our program!   Now that the KTG Ambassadorship program has been developed, we are looking forward to having her help us continue the conversation in the UK, and to work with us as we initiate campaigns in Spain and other countries in the region!

The KTG team has great hopes for the future thanks to the creative collaborative possibilities that continue to evolve. Having young champions like Stan and his passionate mother Jess, both with an eye toward guiding those who follow them, is sure to make a huge impact on the next generation of children with monovision and other blinding eye conditions.

We look forward to seeing what is next for Stan as he continues to thrive and grow!