Specs for Little Heroes

Gifting Protective Eyewear to Children with Retinoblastoma

Our Story
My husband and I noticed a strange white reflection in our 3 year old son, Justin’s eye. It looked like a cat’s eye at night. We thought it was just the way the overhead lights caught it. The vast majority of the time it would look perfectly normal. Then one of his eyes appeared lazy. We took him right to the pediatrician’s office. He examined his eyes. He was not overly concerned. He told us something might be going on with his vision. He handed me a card to call a pediatric ophthalmologist. With no urgency I called that day, took their first appointment, which was 7 days later. My husband and I were beyond shocked and devastated when Dr. Kelly from Glastonbury’s Eye Center told us that Justin was blind in his left eye and that Justin had one of two serious things; Retinoblastoma, cancer of the eye or Coats Disease. We needed to see a specialist immediately. I fainted and became sick. How could our precious baby boy be blind and possibly have cancer in his body? He showed absolutely no signs of being ill. He was as happy and active as ever. We will never forgive ourselves for not picking up on the “white reflection” sign. We had never heard of RB or a white glare being a sign of disease.
Dr. Miguel Materin of Yale’s Eye Center officially diagnosed Justin with Stage D retinoblastoma and told us his eye had to be removed to prevent it from spreading to his brain and the rest of his body. This was truly a nightmare come true. We went to Memorial Sloan Kettering to get a second opinion from Dr. Abramson who 100% agreed with Dr. Materin.
Justin’s left eye was enucleated on May 11, 2011 by Dr. Flora Levin, an ocular surgeon.
It was the worst day of my life. I would have taken both of my eyes out to save his and make it healthy again. I never thought I would thank people for performing this surgery, but I did. Words cannot describe our appreciation and respect for Dr. Materin and Dr. Levin. Their brilliant skill and personal care were unprecedented.

Justin was nothing short of a hero from the start. He was brave, witty and cooperative. He went under anesthesia multiple times and woke up asking the nurses, “Do you guys have any popsicles around here?” We went home just hours after his surgery. He was bandaged from forehead to chin. He cuddled and watched CARS with Daddy. By the next day he was playing in the backyard and just two days after his surgery he was running at full speed. I found myself repeating, “Slow down, Justin!” He respectfully responded, “But Mommy, slow makes me sad and fast makes me happy!” This is truly his motto in life. We have learned so much from him in just a short time.
Justin’s MRI came back clear. Justin Adam was a cancer free kid! I’ve never prayed for anything more in my life!
For the next 2 ½ months he wore eye patches with bright colors and pictures. On July 29, 2011 he was fitted and went home with a beautiful prosthetic eye created by David Gougelman of Mager and Gougelman.
new eye
We could never have gotten through these 3 months without the amazing love and support of our family and friends who were with us every step of the way. Today Justin remains in excellent health and continues to make us proud, amaze us, bring us joy, make us laugh, and of course drive us a little nuts, like 4 year olds do. We wouldn’t have it any other way!

Our Mission:
We followed Justin’s doctors orders and got him non-prescription glasses with polycarbonate (shatter proof) lenses to protect his remaining precious eye from injury. We were shocked and disturbed to find out that our insurance did not cover these. We started this organization to raise money and gift glasses to other children who have retinoblastoma and whose insurance does not cover them.