Our little 4 year old munchkin was born with Miller Syndrome. It is a genetic condition passed down from both parents that effects the face and limbs and in my sons case, also a rare liver disease (of unknown cause) I am looking to connect with other families of this rare condition.

Posted anonymously, 22nd September 2014

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  • Oh no, that doesn’t make things easier. It must be tough to have a sick little one and be the only one in the country. How is he doing?

  • Thanks so much for your answers. I have already been in contact with FNMS and have found the closest people are in New Zealand so as yet, we are the only ones in Australia :)

    He was in That’s Life Magazine issue 40! Thanks again :)

  • Your poor little munchkin, hoping you find a support group soon

  • Sorry, I’ve never heard of this before, however I did find this website for Nager and Miller Syndromes, it’s an international support group: http://www.fnms.net/
    Hope this helps?

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