Stories

Amanda's Story

Being a Kabuki Syndrome Sibling

Having a Kabuki Syndrome Sibling can be super tough. Do you have a sibling? Would you like your sibling to die? Of course you don’t. I know what you are thinking worst case in scenario? Wrong! This is just one little thing that could or would happen. Kabuki Syndrome is a very serious thing too. It’s hard for the sibling, parent, the victim, and the entire family. It’s super stressful for the sibling of the victim. That sibling now has to do a lot on their own. They don’t get a lot of attention and they are ignored a little because the parent has to pay more attention to the victim that is sick most of the time. It’s not a fun thing. Either way it goes you do not want Kabuki Syndrome. Kabuki Syndrome… G-tube to being sick to almost dying, its tough.

Read more: Amanda's Story

A 3 minute oral presentation written by Holly. The subject for the presentation was "What the world needs now, is....." - Holly chose tolerance.

What do you do when you see people with special needs? Do you quickly look away? Do you make eye contact? Do you avoid them or do you say hi?
What the world needs now: is an understanding of people with special needs.

Read more: What the World Needs Now is...

A 2 minute oral presentation written by Holly. The presentation is entitled "My Brother Zac".

I love my brother with all my heart. Every time I hear people call the intellectually challenged ‘retarded’ or use it as a slang word.  Each time I see people stare and make faces at my brother. I think of him and how the people in this world see him and it breaks my heart.  I know that all the love I, and everyone who knows him, has for him won’t change how people regard him, and that is tragic.

Read more: My Brother Zac

Holly's Story

I have had a brother for nine years and they have been the most challenging years I think I will ever face.


I am very grateful that I have had a chance to grow up in a family with a disabled child.  The experiences have made me more sensitive and I can now be more caring and considerate than I ever could have before.  I think that life is very cruel to hand out these hurdles for small children to battle.

Read more: Holly's Story

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Newsflash

A Dream come true for Jack

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Josh is a Superhero

Kabuki syndrome sufferer Josh Concilia shows the world he’s as tough as they come. Read the story here.

Sophie learns to ride

Horse rider Linda Gaffaney overcomes serious injury to teach at riding school for the disabled. Read the story here.

Ollie's Family & Friends to race

Three-year-old Ollie McKinnon has Kabuki syndrome and his family and friends will race in Herald Sun’s Run for the Kids. Read the story here.

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