Diagnosis: Familial Exudative Vitreoretinopathy
Meg and Stew were very concerned to see a white reflex in the pupil of their two year old son Luca’s eye after they took photos using the flash. They were well aware that this Glow can potentially be a sign of a problem with the child’s vision. They immediately called their General Practitioner to express their concerns. Their GP took their concerns very seriously and over the next week and a half they visited three hospitals and eight ophthalmologists and consultants. Luca was given a diagnosis of FEVR.
FEVR stands for Familial Exudative Vitreoretinopathy. This is a very rare genetic disorder affecting the growth and development of blood vessels in the retina of the eye. By the time the condition was discovered, Luca had very little vision in his left eye. Although he would never regain this vision, the family was encouraged to have surgery to prevent further deterioration in that eye.
Meg says that “Never in a million years as parents did we think we’d be taking our child to the hospital for surgery. It’s the sort of thing you hear or read about other families having to go through and never imagine it happening to you”.
Meg and Stew are very grateful that they were aware of the Glow and that they acted as soon as it was first noticed. They are also very grateful that despite having limited vision in his left eye, Luca can look forward to leading a wonderful and happy life. They realize the outcome could have been much worse. Luca’s family strongly encourages anyone who notices a Glow recurring in flash photos of their child to have their vision checked to make sure all is well. They know that early diagnosis of these visual conditions can mean the difference of sight and even life.
All of us at KnowTheGlow are so happy to see Luca’s story shared by Meg and Stew on Instagram and appreciate her continuing to spread awareness through #knowtheglow! We will look forward to watching Luca grow and are delighted to know he’s on track to see the world in the best possible light thanks to his parents’ awareness and quick response!
Luca is Growing Up!
As part of our focus on the UK, KnowTheGlow wanted to check back in with Luca’s family. Luca’s original story was shared a few years ago and Megan was looking forward to checking in on him and hearing how well he is doing after being diagnosed with FEVR (Familial Exudative Vitreoretinopathy) three years ago.
Megan was delighted to learn that the family is not only thriving but it is also growing! Mila, Luca’s little sister, has now joined the family and Luca’s father, Stew, and mother, Meg, are overjoyed with the expansion of their home! Stew, a firefighter in Telford, sat down with KTG to share an update and provide a bit more information on not only Luca but also the support services provided in the UK for children with vision impairment.
As you may recall it was a “glow story” that had originally alerted Meg to the fact that finding the glow in a photo of a young child could be an indicator of possible eye disease. Once diagnosed, it was revealed that Luca has bilateral FEVR which left him with very little vision in his left eye but fortunately has not impacted his right, which has better than perfect vision!
Dr. Ainsworth, the family’s original doctor in Birmingham who helped diagnose Luca, recently retired and they now rely primarily on their local doctor in Telford for checkups to confirm there have not been any changes with Luca’s condition. Fortunately for Luca, the gene impacted with FEVR is the mildest of the four and it is hoped that the condition will remain dormant. This allows the family to work with the local UK Sight Impairment / Sensory Inclusion Team as well as the doctors watching over him, to map out a course plan that will help strengthen the muscle in his affected eye with surgery in the future.
Luca wears glasses to try and help keep his left eye tracking with his right but even with glasses still has a turn in his left eye. Luca’s doctors hope that a muscle strengthening surgery can correct the alignment and allow his eyes to track together. Over time this surgery will need to be repeated to further strengthen the muscle connection. While there is not a FEVR foundation or support group in the UK, there is a wonderful Facebook Group where parents are able to work together to help share stories and address issues related to raising a child with FEVR.
It’s been some time now since that Christmas Eve when Luca had his first laser surgery to address the blood vessels that were impacted by FEVR. Now nearly five years old, Luca is enjoying Reception (Kindergarten) at his wonderful school in the UK. While not as much a fan of rough and tumble sports as he is of all things Pokemon. Meg works not only to care for Luca and raise Mila but also is a dance teacher to various ages and works with those who have special needs.
It was heartwarming to hear how well this family is doing and we look forward to watching Luca grow supported by his incredible family and caring team of doctors and vision care representatives in the region. The family continues to hope that through sharing Luca’s journey more parents will recognize the warning sign of the glow in flash photographs of young children and guide their children to care!
