Story of Aniridia Asia

Do you want to hear my Aniridia story?

We were overjoyed to welcome our little one and dreaming one day he will be swimming in the ocean, playing football under the hot sun, chasing his friends at the park...

In his first month, Daddy noticed our little one wasn't focusing on his face and questioned if he could see.

"Of course he can't see yet, he's a baby!" I answered impatiently.

I casually brought this up to our PD at our first month visit and right away we were sent to a PD ophthalmologist then A&E for kidney and brain scan and meeting with geneticist for genetic test.

I didn't expect that casual question would turned into this serious matter.

My tears kept rolling.

"Your son has Aniridia." the ophthalmologist said.

I have never heard of this word in my life.

Follow with "It happens 1 in 100,000, Aniridia means missing Irises, light sensitivity, low vision, cataract, glaucoma, maybe WAGR, fovea, optic nerve... genetic tests, PAX6..." I almost fainted.

I couldn't digest it in 2 hours.

My only question was "Can he see?"

The answer was "We don't know."

We all been through this moment, lost of hope, heart broken, why me, why our little ones... what about their future?

1 in 100,000 - it landed on us.

I couldn't believe it and I still can't, to be honest.

Since day 1 of diagnosed, I googled from day to night to learn about eyes, Aniridia, genetic, PAX6, sun protection, UV, sun glasses, healthy diet, foods that are good for eyes...

I visited almost all aniridia-related websites and realised most Aniridia related researches, studies, conferences and organisations are from oversea and we are living in Asia.

There are Aniridia Europe, Aniridia UK, Aniridia Australia, Aniridia Canada... How about Asia?

Where are all these Aniridia Asia people?

So I started my first post on Aniridia Family Facebook because I was so lost in dark and couldn't find any community support in Asia. Responses were overwhelmed and each of you and your words touched my heart. A lady called me from the other side of the globe to cheer me up and shared her stories with me. A lady shared with me her Aniridia children photos and videos to comfort me that being an Anridian can do well in life. Those pictures and videos really calmed me that knowing one day my son will be fine and do well just like them.

I wished I can do more for him.

On his one year old birthday I decided to start Aniridia Asia as his first birthday present.

You will find the answer of "What is Aniridia" on google and it comes with all the scary terms, glaucoma, cataracts, light sensitivity... which means wear sunglasses, routine check up, early intervention... for life.

What about our daily life? What kind of the sunglasses should I get? What brands? What style? What lens? How about toys and books? How to stimulate their vision through play? How about swimming? Goggle? Sun Hat style? Pram selection? Where to buy them?

I wanted to start a place for our little ones and newly diagnosed parents, where you will feel calm and comfort with love, and most important: PRACTICAL daily life tips!

I will gather all essence informations and daily life tips I have learned and document all in one place - Aniridia Asia.

Our little ones are still really young and science technology is blooming. Scientists are working hard. Gene therapy sounds promising. I do see hope in future. Hope for treatments to maintain and stabilise their vision, to cure Aniridia.

Please trust me, everything will be fine, once you adapt to the new normal.

I cried for over a year every nights staring at his cute little angelic face, so innocent and he has no ideas the challenge he will face.

I still cry - like now when I am writing this, he's 18 months old.

It takes times.