Ava

“At three years old my daughter was blind with two artificial eyes… She has already experienced so much medical trauma at a young age but let me tell you, our little Ava has incredible spirit.”

My name is Neetu and I am the mother of our little Eye Hero, named Ava and we reside in Vancouver, Canada. Ava is now 6 years old and she is the eldest of our three children. She has a brother named Kaysen and a sister named Kayva who are 4 and 2 respectively.  

Before Ava turned two years old, she stopped making eye contact and I noticed that her visual perceptions were off. Worried, I took Ava to an ophthalmologist. We ended up seeing 5 different ones and we couldn’t figure out exactly what was wrong. 

It wasn't until one day, where I was playing with Ava and gently tossed a ball towards her, the ball went right by her and she did not react. This is when I knew something was terribly wrong and I took her to emergency. Ultrasounds were done and we found out that she had retinoblastoma in not just one, but both eyes. 

She started chemotherapy right away and while her right eye responded, the left one did not and this is where it was decided that her left eye would need to be removed. We continued with chemotherapy treatment on the right eye. 

During the pandemic, I still had some concerns and worries and decided to take Ava to see a very reputable ocular oncologist in the United States so that we could examine Ava’s remaining eye more closely. This doctor confirmed my fear. It turned out that the retina was completely damaged in her right eye as well. The cancer was potentially spreading to her optic nerve. Now her right eye needed to be removed to save her life.  

At three years old my daughter was blind with two artificial eyes. 

She has already experienced so much medical trauma at a young age but let me tell you, our little Ava has incredible spirit. She has not only adapted to sight loss but she is proud of her artificial eyes and is often overheard telling her classmates that she has a special eyes. 

At her tender age, Ava has learned to read braille, is currently learning to play piano and does not let her vision prevent her from doing what she wants! She is absolutely fearless.

We have grown so much as a family and parents and now mentor other families whose children are experiencing retinoblastoma and vision loss. 

One thing I knew for sure was that I did not want my daughter hiding this because this is a part of reality. It is her reality. It makes Ava the extraordinary girl she is. 

The biggest challenge we experienced was trying to make other people understand that she has functioning abilities. 1 hour with Ava and she herself will make you see how capable she truly is.

My advice is that if your child is going through something similar, I promise that your child will be okay and they will thrive as long as you are supportive and remind them of how unique and special their abilities are. If the old me knew Ava would be this amazing - everything could have been a lot easier.

Neetu ( Ava’s mom) is available to help others who are going through any form of vision loss for their preschool children.