"My name is Jasper, I'm four years old and I have Albinism."

On his first day of kinder this week, Jasper’s mum distributed this letter to all the parents at her son’s kindergarten.

Hello,

My name is Jasper and I have Albinism. Your Mum and Dad might know this better as being ‘albino’, although I don’t really like being called that because Albinism is just a small part of who I am.

Albinism is a genetic condition (this means it came from both of my parents) and I am one of only about 1,200 people with Albinism in Australia – pretty cool huh!

Having Albinism means that I didn’t get any melanin (the thing that gives you colour to your hair, skin and eyes) and I sunburn very easily. I do have blue eyes and super cool white hair.  The bright light and sunshine can hurt my eyes so you will see me wearing sunnies and a hat outside and lots of sunscreen.

I can’t see as well as you. I wear glasses to help me see better, but even with those on I find it very tricky to see things. If you put your arm out, I can only really see clearly as far as your fingers. This means that if you stand too far away from me I won’t see your face and may not know who you are.

Once I get to know you better I will learn to recognise your voice so if you can call out to me to let me know where you are then that would help me a lot.

It’s difficult to explain how I see or what I see, but things look pretty fuzzy like they are out of focus. I would be grateful if you could come and introduce yourself to me and don’t worry if I look closely at you. It is very confusing when I go into the playground, it is hard to work out where my friends are when you are all running around, so if you could call out to me, or invite me to play that would be great.

You probably won’t notice that I am vision impaired because I paint, draw, run and jump just as well as all my friends and I can even see very tiny things if they are really really close to me.

Just remember, if my friends are standing with a window or sun behind them I’ll probably just see shadows. If I’m looking for something, please don’t tell me it’s “over there” because I can’t see to the other side of the kinder room. “Near the library corner” or “Charlie is in the sandpit” or “the pencils are on the grey bench under the window” would be really helpful.

Steps and slopes can be difficult for me to see and sometimes it helps if you show me where these are. Once I know my way around I am fine.

Sometimes  I might come up and seem to jump into a game and say or do the wrong thing. I just want to join in like all of you, but I find it hard to work out what you are doing. If you could gently explain your game to me so I don’t make mistakes that would make me very happy.

You might have noticed that my eyes shake a lot – this is called Nystagmus – it doesn’t hurt my eyes or make me feel dizzy, but it does make it difficult for me to try to focus on things and can make me feel quite tired too.

One of the hardest things for me is social interactions. I can’t see how you are feeling so I need you to use words – it’s difficult for me to see if you are frowning or smiling at me. If you wave at me and I don’t answer I’m not being rude, I just haven’t seen you. I also can’t tell if you are talking to me in a group so you can help me by saying my name first so I know to pay attention.

Most of all I am just like you – excited to go to kindergarten, nervous about all the new friends I want to make and all the fun things we are going to do this year.  I love Octonauts, playing cars, reading books and playing with friends.

If you would like to know more about Albinism then my mum Lee is happy to talk to you.

Thanks for reading.

Jasper.

Jasper is 4 years old and has just started Kindergarten. When he’s not playing cars with his friends, he loves watching Octonauts, hanging out with his little sister Tabitha and riding his bike.

Albinism is a rare genetic condition affecting about 1000 Australians. It causes the body to be unable, or have limited ability to produce melanin which is responsible for the colouring in skin, hair and eyes. Most people with albinism have some degree of vision impairment, many are classed as ‘legally blind’, but people with albinism have different experiences of living with the condition. This letter details Jasper’s particular experience of albinism, but you can find out more about the condition at the Vision Australia website or the Albanism Australia website.