When a child is diagnosed with an eye-condition or disease, their whole world can be upended. They can go from normal, happy child to a never-ending sequence of doctors visits, surgeries, physical therapy and, at times, chemotherapy. This unhappy process is often made “survivable” by the teams of doctors, nurses, optometrists, family and friends who support the child and their family.
So in November, a month marked by Thanksgiving, we want to take a minute to thank the unsung heroes that define a child’s journey in dealing with life-changing eye conditions and diseases.
We give thanks for the pediatricians that take a little extra time and follow-up on little problems.
Most young children see their pediatricians regularly. Surveys have shown that most doctors see their patients for only about 15 minutes per visit. We thank the pediatricians who are particularly careful and perform tests that can uncover serious eye conditions. Pediatricians like the one who saw Aubrey and noticed something wrong:
“Her pediatrician did a routine red eye reflex test and found her to have an abnormal reflex in her left eye. Concerned, he sent them the very next day to Akron Children’s hospital for an evaluation. It was there that Aubrey was diagnosed with Coloboma.”
Thanks to him and his quick recommendation, Aubrey was able to avoid any potential hazards or learning delays by understanding and getting treatment for her eye condition.
We give thanks for the doctors and nurses who accompany the children and families with love in support in the hospital.
Children diagnosed with eye conditions and diseases will most likely end up spending time in the hospital, especially those diagnosed with retinoblastoma. Often it is the hospital staff, the doctors and nurses, who make the visits and procedures endurable. They often make tough decisions palatable and guide families through the process. Maxen’s family experienced this firsthand:
“The staff was amazing! Within 24 hours we were admitted, had a confirmed diagnosis of Bilateral Retinoblastoma, and were faced with a decision of having our little boy’s eyes removed or going through months of brutal chemotherapy and laser/cryotherapy treatment to save them. We felt that if there was any chance of saving any vision, it was a chance we were willing to take. The staff at CHLA made this decision even easier with the confidence and patience that they showed us.”
We give thanks for the moms and dads who follow their instincts and go to great lengths to care for and protect their children.
Of the children who present with “the Glow”, 80% are first recognized by their parents or guardians. Parents spend the most time with their kids and are the most aware if anything “feels off”. We at Know The Glow hear story after story about how parents knew something was wrong even when the doctors dismissed it. Skylar’s mom persisted after several doctors told her everything was ok:
“ Laura was frustrated as she was the only person to see the Glow in her left eye. Her husband never saw the Glow. Skylar’s daily sitter did not see the Glow either. She was not capturing the Glow in her flash photos and so three separate doctors on three separate occasions told her everything was fine. But Laura knew in her heart her baby was in need of help. She was determined to find it for her.”
While a diagnosis of a serious eye condition or disease is a heavy burden on the kids, it can also mean the start of a better life. They can still be happy after treatment and may even be happier now that they’re receiving treatment for whatever was limiting their sight and causing discomfort. One thing is for sure, it is thanks to the support they receive that they can grow and blossom
And we give thanks to those who make our work possible.
Without Know The Glow, parents and guardians would simply not know about the implications of “the Glow”. Our advocacy and education empowers parents to protect their children’s eyesights. Early detection can be the difference between a life of sight and a life of blindness. Please consider supporting Know The Glow’s ongoing efforts to prevent childhood blindness. Click here to donate.