Hi

I live in Sydney Australia and have a 3.5 year old daughter named Jorjah. She was diagnosed with wolf hirschhorn syndrome at 4 months old. She was born average 6 pound 1 ounce but didn’t grow very fast and thus was found to have this chromosome disorder. Jorjy has growth retardation, moderate global developmental delay and a cleft palate. Other than that we are lucky to say she has had no other problems. She is a loving and caring little girl whom has limited speech and poor motor skills. She walked at 13 months and is super active. Our family are me ( Skye) , her dad (Adam), her brother Tobias (15months) and unborn (30 weeks). We come from a big aboriginal indigenous Australian family with lots of love and support. I am happy to have found this support because it is hard to find anything about this syndrome that isn’t severe, where Jorjy is quite mild. I hope to find some support from other families with similar characteristics.

 

2 Responses to Jorjah (3.5yo), Sydney Australia

  1. Anna says:

    Hi there.
    My name is Anna and I have a 10 year son named Ryley who has WHS. We live in Ballarat, Victoria. Our family actually hosted the biennial conference last year! Would love to put you in touch with our Aussie Support group. We are a small, but growing group and have an active Facebook page. You can check out our blog too if you like (www.blogaboutabloke.com) Would love to hear more about Jorjah.

  2. Heather18 says:

    Great to meet you, and great to hear your little one is up and mobile! And blessings on your current pregnancy!

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