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Levi VanEchaute |
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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
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