Josh & Yasmine & Jenni & Frank

Twelve-year-old Josh Concilia has Kabuki Syndrome and was diagnosed with Leukaemia several years ago. Five months ago, Josh’s parents, Jenni and Frank, were introduced to Yasmine Luu, a volunteer with Very Special Kids. Yasmine also likes comics and superheroes and visits Josh on Sundays to dress up and play.

Josh’s story

When I didn’t have cancer there was always a big smile on my face. I never worried about anything. When I was in treatment I was worrying and every single day I’d wake up being scared or something. Now I feel that I’ve just overcome this big, big obstacle in my life and I jumped over it and I think we’re going to get through it.

Sometimes before I met Yasmine, I was so sad at school that I didn’t want to talk to anyone, but now people wouldn’t know that I’m sad. I just talk to everyone and I’m very, very happy and want to be a great friend to them, like Yasmine is to me. I started high school this year and have new friends, sort of like Yasmine.
I love meeting new people and when Yasmine came in and we started talking to each other, I knew she would be my second best friend. Okay, first best friend! It makes me feel very special when Yasmine comes here. I even forget what I have to do that day.

My favourite play is when we have to stop these people and go back in time, even before superheroes were imagined and no one knew who they were. It’s pretty weird because the time machine is kind of in Dad’s man cave; don’t tell him! Mainly we play with my figurines and make them go on adventures. One time we had to save Bruce Wayne from something and we ended up saving Bruce Wayne, but the sad thing still happened.
I have this Joker costume. I love it. It reminds me of the Dark Knight when the Joker was doing some mean stuff. I like it when he does the mean stuff and is planning traps. He’s very smart. Sometimes I’m evil; sometimes I’m put under a spell for a thousand years; and sometimes I pretend to be a vampire.

We’re all going to Comic-Con. I have my outfit all set up. There are one or two characters that I might go as, and I’m still debating about Hell Boy, but that is difficult because my face has to be red. I like Agent 47 from Hitman, so I might go as him and wear a suit. Maybe I might go as the Joker…

My little sister Mia had this friend called Emily and I used to play with them, but every single time, I felt that I’d like a friend like that. And then when Yasmine came I knew I’d found a friend like that. Thank you Yasmine for being my best, best friend. You are the coolest girl I’ve ever met.

Yasmine’s story

It was so good meeting Josh. We were talking about comic books and I asked Josh what his favourite comic book character was and he said “Deadpool”, and from that moment it was “Yep. This is perfect.”

I look forward to seeing Josh every second Sunday. It’s super great. I like playing around and I get to share all these things that I’ve collected over the years. Last week I brought a collection of Harry Potter wands and we were playing around with them. Batman is the main superhero I bring over because we can battle each other which is fun. I just look forward to it all the time because Josh is my best friend too.

I volunteered overseas building houses for a while. The last house I built was with a family of 13, so I knew I loved kids. When I came back to Australia, I did a subject called Genetics, Health and Society and the Lecturer told me about Very Special Kids. I went to an info session and did the training and was given Josh as a client. It’s been about five months since then. Volunteering adds to my life. I get to talk about Josh all the time when I’m out with my friends. I love it.

Josh is leaving soon for Disneyland. I’m going to miss the times we have and I don’t know anyone else I’d have imaginary playtime with. I can’t dress up in costume without him. If I had to dress up in costumes alone, people would think I’m weird. Josh and I saw a mask on the Internet so I bought it to wear at Comic-Con. It’s a really cool Rorschach mask from Watchmen. It’s thermo, so if you breathe, it changes. It’s very cool.

I haven’t grown up I think. I like using my imagination. I’ve learnt never to take anything so seriously, because everything can change. Nothing is set in stone; you can always hop in the ‘time machine’. It’s a good analogy for life, I think.

Jenni and Frank’s story

Josh missed school all of 2012 and most of 2013. He only went back part time last year and now he gets to go every day apart from treatment days. I think it was hard having missed so much school. Since Yasmine’s been coming over, Josh doesn’t get so stressed about going back to school and he’s starting to make some new friends at school, which has just been beautiful.

The two of them have a ball together, running around the house with costumes on, with weapons in their hands, chasing each other. No time for worrying about anything while they’re doing that.

Cognitively it’s been really good for Josh to focus for that length of time. It’s quite an intricate role-play that he and Yasmine do and that’s been really good for him. If we asked Josh to go for a run, he wouldn’t be able to do it, but he and Yasmine can run up and down those stairs ten times. There are just so many added bonuses and benefits that we could never have anticipated. The rewards are just overwhelming.

Yasmine’s friendship with Josh is unconditional. She does everything, and is confident to do it, and not too worried about what we think. She’ll just play with Josh and have a great time, running through the house, and I think that’s just absolutely beautiful.

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cosplay

Eight volunteers and their clients in palliative care discuss how the volunteers and volunteering has changed their lives. Commissioned by Palliative Care Victoria in 2015.

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cosplay

Twelve-year-old Josh Concilia has Kabuki Syndrome and was diagnosed with Leukaemia several years ago. Five months ago, Josh’s parents, Jenni and Frank, were introduced to Yasmine Luu, a volunteer with Very Special Kids. Yasmine also likes comics and superheroes and visits Josh on Sundays to...

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