Retinoblastoma: checking digital photos for “white eye”

In 2007, RAK writer Brittany Walker wrote about Grace Zellers, who lost her left eye to retinoblastoma before her first birthday.

Stacey Zellers, Grace’s mom, wrote in a few weeks ago with an update on Grace who is now 5 years old, and getting ready for kindergarten in the fall. Grace now has a brother, Gavin (3) and a sister, Olivia (14 months).

Grace is doing well. Stacey says her vision is good, besides some challenges with depth perception. “The brain compensates in remarkable ways,” says Stacey, who adds Grace can color and write and do close work. She might need some help getting to know the terrain at a new park or play area to distinguish different surfaces, but other than that, says Stacey,  “she’s pretty much O.K.”

Grace’s Rb was discovered because Stacey, a former first grade teacher, happened upon InfantSEE, a nationwide program that provides free eye assessments for infants between the ages of six months and one year.

Check InfantSEE for a provider by zip code.  

Stacey, five months pregnant with Grace, learned about the program while watching the Today show. She made a mental note.

When Grace was seven months old, Stacey took her to see the Chandler optometrist who found Grace’s tumor. Read more about Grace and her story.

Retinoblastoma, though rare, is diagnosed  in 250-350 children in the United States every year. According to the National Institutes of Health, Rb causes four percent of all cancers in children younger than 15 years.

The group’s mission is to provide support for families affected by the disease and to raise awareness- to encourage parents to take advantage of the Infant See program.

Stacey says that the routine eye checks performed during well visits aren’t always enough to catch the beginnings of Rb in kids. “It’s really astounding how many sad stories I hear of pediatricians who have missed it.”

Although Rb is highly curable, (95% cure rate in the US) children in other parts of the world are not so lucky. Many die before the age of five from this disease.

Daisy’s Eye Cancer Fund, (DECF) an international non-profit working to provide young children around the world with access to medical care, estimates that every hour a child dies from Rb.

On June 25th at the Squaw Peak Hilton, DECF president Abby White will speak to Phoenix area families about Rb. Abby was diagnosed with the disease in both eyes, as was her father, who was born in Kenya in 1946. Today, Abby works to raise funds to help save the sight – and the lives – of children in developing countries.

One very simple warning sign for Rb is the white glow that often appears in photographs of one or both eyes of young children. Stacey says a parent’s first thought may be to use digital software to correct the photo, but she urges them to be aware that what may appear to be effects from a camera flash could mean something far more serious.

Here’s Grace a week before she was scheduled for surgery. Although at the time the picture was taken, the Zellers knew of Grace’s diagnosis, this was the first time that the evidence surfaced in a photo.

“Parents should be looking at their pictures constantly,” says Stacey. “If you see something, have it checked out. It’s key. You bring that picture as is to your doctor and say, here’s my concern.”

 Abby White even wants digital cameras to carry a warning on the back about Rb.

For more information on Rb, or to find out more about how to support DECF   or to hear Abby’s presentation, contact Stacey at 602 549 6714 or email at srzgaz@yahoo.com.

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