25 February 2015

Maya is a seven year old who is excited about the Australian Ichthyosis Meet. "I could do with some more friends like my sister."

The Australian Ichthyosis Meet is now at capacity - with 71 patients and family members registered. Sponsors have come on board (I will announce those soon), and many people have donated money - I am so grateful for everyone’s support. Thank you! I am also excited learning about who is attending the event, and have asked some of the attendees to write about why there looking forward to coming.

Maya is a seven year old who is excited about the Australian Ichthyosis Meet. Her little sister has Ichthyosis. On describing her sister, she said "I could do with some more friends like that."

I met Maya’s little sister Matilda when she was just a snuggly five month old. Matilda and her Mum were at the Royal Children’s Hospital in 2013, and I visited them to offer support.

I am so excited they’re coming to the Australian Ichthyosis Meet in May! Maya will be there too - she’s so excited about the meet. Maya wrote a little message about her excitement - she’s a wonderful big sister. So cute! (Note - unlike all other guest posts published on this blog, I didn’t edit Maya’s for spelling and capital letters. I wanted to leave it pure, and I love that her imagination is captured through words.)

"My Name is Maya , i am 7.

when my Mum told me we were planning a trip to melbourne in May , and i was actually going this time . i was exicited, i like the aquarium in melbourne but my mum is not always able to take me when they go to the hospital, incase they get stuck there.

At first i was unsure what an Itchyosis conference was, i know what Itchyosis is my little sister has that , its apart of her.

So i had some questions to ask my mum and she let me read showed me some of Carly's blog post online. Matilda my little sister met Carly when she was a baby. Carly is matilda's friend.

then i understood , i will be able to meet other big sisters like me , who have little sisters or even big sisters or all grown up ones with Itchyosis. I hope there nice , i'll try to be nice.

i hope they will be able to tell me about some of the inside games they play , matilda is a bit sick of our current inside games and i'm running out of idea's.
i've never seen anyone that looks like my little sister , most of the time she just looks wrinkly and red like you've been in the bath too long , but sometimes shes really sick. Most of the time shes really funny. Smart and runs superfast and she eats all my crusts and vegetables when i dont want to eat them.

i could do with some more friends like that.

i am looking forward to comming to Melbourne in May from Tasmania , to meet new friends from Families like ours."

If you would like to donate to the Australian Ichthyosis Meet, you can do so via Go Fund Me


  1. I hope you get to meet some big sisters too I love reading these blogs and I hope you can get some more inside game ideas too,I know I get ALOT of support from my friends from ichthyosis and family.

  2. Maya its going to be lots of fun to meet new people who are a little bit like your sister. It sounds like you love your sister alot. Im sure my little man wil look forward to playing with you and matilda. Hope you have a great trip to melbourne and get time to go to the aquarium while you are here.


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