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Author Topic: (H-ABC) Hypomyelination with atrophy of the Basal Ganglia and Cerebellum  (Read 14275 times)
jinkyjill
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« on: July 25, 2010, 02:28:41 PM »

My daughter aged 4 years has recently been diagnosed with Habc.  As far as we are aware she is the only one in England with this disease and there is only another 20 people worldwide suffer from it.  We know that there is someone in Japan with it and someone in Brazil but thats all we know.  It is very frustrating as there is limited info about this illness.  She cannot talk and has very bad mobility problems, along with delayed learning although symptoms vary in each case.  It would be fantastic to hear from anyone who has heard of this or knows someone who has this disease.
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janetj
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« Reply #1 on: November 30, 2012, 05:10:31 AM »

Hello ,, My 7yr old grandduaghter also has HABC ,, are you still monitoring this site ??
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jinkyjill
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« Reply #2 on: December 20, 2012, 09:23:53 PM »

Hi Janet

I would be very interested to speak with you. My e mail is jinkyjill@yahoo.co.uk and I am also on Facebook as Jill Nesbitt. Please feel free to get in touch. Are you on Facebook? I look forward to hearing from you.
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