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.”
“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.