Levi VanEchaute

Levi is 6 years and in First Grade. When Levi was born in 2011, we noticed that his right eye wasn’t moving correctly so we took him to see a specialist. After undergoing many tests and surgery at the age of 4months old, we learned that he had a Hemangioma (AKA a Strawberry) behind his right eye . A Hemangioma is a non-cancerous growth of blood vessels. They’re the most common growths or tumors in children. They usually grow for a period of time and then subside without treatment. Unfortunately, that was not the case for Levi due to the where the Hemangioma had formed.

After the first surgery, we learned that Levi would need to be on medications to help stop the growth in hopes to keep the mass from growing and causing him to lose his vision. We had many consultations with doctors in Cooperstown and Albany, where they were unable to find the proper dosage amount for the meds he needs for his height and weight. After many MRI’s and becoming frustrated at not being able to help Levi we started searching for more options. After talking with many friends and family we found out about Flaum Eye Institute in Rochester NY. When Levi was 10 months old we packed up and moved to Rochester NY to get him the proper care he needed. He underwent 2 more surgeries and many more MRI’s to understand more of what was going on. At 11months old he was finally givien the proper meds to help relieve all the pressure and pain he was having. Levi was seen by doctors every 2 weeks for the next several months.

Things started to look good for Levi, so we moved back home and only had to see doctors every 6months. Things seemed to stay stable for Levi for the next few years! We learned when Levi was almost 6years old that even with all the meds and treatments, he had lost his vision in the right eye. Levi started complaining about pressure and headaches again, and after talking with the doctors in April of 2017, the only option left to give him relief would be to remove his right eye. Wow! That was a shock for us and such a little guy. We allowed Levi to make the decision and he chose to wait and deal with the pain because he wasn’t ready to lose his eye.

On August 11, 2017 Levi started complaining of serve eye pain, We took him to Cooperstown ER to find out what was wrong. He was diagnosed with a corneal ulcer in his right eye because his eye never closes completely. They gave us drops to use every 2 hours, which was very painful for Levi. We were told to follow up with his Rochester doctors. After we saw his doctor we were quickly shuffled around to many more doctors, as the infection had become worse. At this point we were told that the best option was to remove the eye. Levi’s pain was so bad that he jumped on the plan since he was told his pain would be all gone.

So on August 17th 2017, he underwent surgery to remove his eye! Levi, then needed to heal and get fitted for a prosthetic eye. After several months and lots of hard work from Levi he received his prosthetic eye on December 11th, 2017. What an amazing Christmas gift for a brave little boy. Levi, will still need some surgeries to get a better fit to his prosthetic eye, but for now he is a much happier little guy!!

Younger Levi