Het verhaal van Harvey

On the 23rd of October, 2020 our little boy Harvey was born. Harvey was born in Bangkok, Thailand where we are currently living for Harveys dad work but originally are from Australia. 

Being 2020, it was the middle of the pandemic and this meant we had no family around and could see very few friends due to the restrictions of lock down. 

Harvey has a older sister Lucie who was so excited to meet her baby brother and we all were so excited for Harveys arrival to complete our little family. 

At around 3 months of age, I started to notice something was not quite right with Harveys vision. Having already had another child I could tell things were a little different. His eyes wouldn’t track anything, at the time he could even follow a light and wouldn’t react to anything we did. 

From here started the long process of trying to figure out what was going on and at the time my biggest worry was that my little baby might have to wear glasses. Little did I know that was the very least of our worries. 

After many tests and hospital visits they told us that they think Harvey has Leber’s Congenital Amaurosis or LCA. We were confused, overwhelmed, and so sad. I had no idea what this meant or how it was possible that this could happen to our little boy. It truly was one of, if not the hardest days of our lives receiving that diagnosis. 

The next step from here was to do genetic testing to confirm the gene type Harvey had, which we soon found out was LCA – AIPL1. Which is one of the more rare and aggressive forms of LCA with most thinking that it will result in total blindness later on in life. Again another difficult day. 

We are now over 2 and half years from the diagnosis day and our whole mindset has changed. Harvey is just amazing. He blows our minds every day, he is so capable and so full of energy and has absolutely no fear. He loves to swim, go to the playground, play with his sister and is madly in love with cars and trucks. He is now attending a main stream kindergarten that he goes to 4 mornings a week and really enjoys. 

Our hope and dreams for Harvey is for him to have independence and to live a happy life being included by all. We hope to educate others so they can to educate there children about those living with disability to teach them they are capable and they can do anything anyone else can. 

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