Specs for Little Heroes® was inspired by quite the little hero himself—Justin. At the age of three, he was diagnosed with Retinoblastoma, a rare cancer of the eyes impacting 250 to 300 U.S. children each year. An immediate enucleation of the left eye followed. After a nearly three-month recovery, Justin was deemed cancer-free and sent home with a prosthetic eye. Doctors recommended that he wear non-prescription, shatterproof lenses to protect his remaining eye. Children with only one eye are eight times more likely to injure or even lose the other. Shocked to discover that insurance did not cover this protective eyewear, Justin’s family founded Specs for Little Heroes.
Specs for Little Heroes® was inspired by quite the little hero himself—Justin. At the age of three, he was diagnosed with Retinoblastoma, a rare cancer of the eyes impacting 250 to 300 U.S. children each year. An immediate enucleation of the left eye followed. After a nearly three-month recovery, Justin was deemed cancer-free and sent home with a prosthetic eye. Doctors recommended that he wear non-prescription, shatterproof lenses to protect his remaining eye. Children with only one eye are eight times more likely to injure or even lose the other. Shocked to discover that insurance did not cover this protective eyewear, Justin’s family founded Specs for Little Heroes.
Today, this charitable organization has gifted more than 250 pairs of protective eyewear to children treated for Retinoblastoma. We had the distinct pleasure of chatting with Justin’s mother and founder/president of Specs for Little Heroes, Erin Lafleche. Read on to learn about the phenomenal work this organization is doing to further the mission to prevent childhood blindness.
- Justin’s story is amazing. How is he doing? Can you update us on his health?
Justin is doing fabulous. Three-and-a-half years later, he is 100 percent cancer free. The genetic testing found his retinoblastoma was unilateral, meaning it was fully contained in one eye and there is no mutation.
Justin is going into second grade. He is extremely resilient—he’s a blue belt in karate, a black diamond skier and a soccer player. He is becoming a little more self-conscious about his prosthetic eye. When he was little he would take it out to show people. Today he’s more private about it. However, during story time, his teacher read a book about being different and he decided to share his story with his entire class. This disease does not define him, but certainly shows his strength.
- Specs for Little Heroes was inspired by the discovery that insurance did not cover protective eyewear for kids with Retinoblastoma. Can you tell us more about your organization’s journey from its inception to today?
Originally, we just went into a LensCrafters® with our doctor’s orders. Justin was getting used to monocular vision so he was still a little clumsy which made protecting his good eye that much more important. After finding out insurance wouldn’t cover protective lenses, I decided I needed to use our Retinoblastoma journey to help others. Our entire family and friends have supported Specs For Little Heroes. An attorney friend helped us achieve our nonprofit status, my brother built our website, a friend drew our logo, my husband helps with fundraising, my dad helps with finances, my 9 year old daughter, Juliana, is our creative consultant, my mom mails the rec specs glasses and writes thank you notes … it’s really a team effort.
Today, most of our promotion comes from Facebook®. In fact, 150 of the kids we’ve helped came from our RB [Retinoblastoma] Moms group on Facebook. We also work closely with the patients’ local optical shops to get them the best glasses near their homes.
- Providing eyewear to 250 children is amazing. Congratulations! How many more children do you expect to help in 2015?
We are expecting to gift 100 pairs of glasses this year. We are so thankful for our partners. Miraflex® gifts all our frames and Liberty Sport Rec Specs® donates 25 pairs of glasses each year. This enables us to really stretch our money as 100 percent of donations go straight to glasses. We’ve had numerous other optical shops donate or discount eyewear as well.
- These glasses are quite costly. How does Specs for Little Heroes encourage donations? And do you have a specific message you would like to share with potential donors?
We are just a normal little family who had an idea. And because of everyone’s donations and support we’ve been able to make this dream a reality. We feel fortunate that we’re able to serve. It’s healing and rewarding work.
These glasses allow children to be children. They can go out and play, be adventurous and not worry about restrictions. Parents get peace of mind because they do not have to worry so much about their children’s eye care. Eye injuries are more common than people think and accidents take a lot of eyes—these children cannot afford this risk.
- Where does Specs for Little Heroes serve children? Is your operation regional, national or global?
The majority of children we’ve supported have been in country, but 20 have been outside the U.S.—Belgium, China, the Philippines, Canada, Australia, England and South America. Most children come to us through the RB Moms group, Smilow Cancer Hospital, Wills Eye Hospital and Memorial Sloan Kettering Hospital.
- What are your next goals as an organization?
Fundraising is what is next! We started with a goal of giving out just 10 pairs of glasses. But now the requests are coming in faster than the money. You can donate to Specs for Little Heroes on our webpage: www.specsforlittleheroes.com
- Is there anything you would like to tell other parents? More specifically parents of children with RB?
We believe that things happen for a reason and to people who can handle it. Justin is that kid. It was important for us to overcome and use this experience to help other families.
I wish I would have known to Know The Glow. We were looking at the glow for a few months not knowing that our child was playing in our home with cancer! We thought it was just the way the light caught his eye. Our family is very educated, yet none of us knew the signs.
Parents should always trust their instincts. I can’t help to think of the potentially devastating consequences had we not gone to get a second opinion? I brought a photograph of Justin’s white glow to our physician and he said there was nothing to be concerned about. But something just didn’t sit well with me. So we went to get a second opinion and discovered our son’s little eye was filled with cancer, which would have spread to his brain without immediate treatment. If you are ever concerned about anything, get it checked and rechecked and if it is nothing, great!
Sources: http://www.specsforlittleheroes.com/