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Families who have children and young people with special needs very often deal with similar life styles. We have all had concerns ranging from education,acess to services,respite and other issues directly related to their childrens needs. Parents of disabled children bring families together for friendship, to share information and to support one another.

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kabuki syndrome/ blind children
cheapsensorytoys
Hi we were told last week our 2 yr son has many of the charctoristics of a kabuki child are gentics doctor took many photos of him and was going bk to her team to discuss it with them so now sat waiting for more news xx
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#6 09-25-2011, 07:07 AM
(09-20-2010 07:39 PM)plinston28 Wrote:  Hi i'm mummy to Ben who has kabuki syndrome, serious heart condition hypoplastic left heary syndrome, is blind, can't walk or talk.
Just hoping to find any parents of kabuki or blind children.
x x x x

hi my name is emma. and ive got 4 children my oldest jordan is blind (13years).. has been from birth..be nice to chat x
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#7 01-02-2012, 08:46 PM
cheapsensorytoys
Hi I have a 2 1/2 year old with Septo optic dysplasia she is blind and has all her hormones replaced with medication. she is severly delayed but is a lovley little girl.

Mummy to a very special little girl with Septo optic dysplasia, Diabetes Insipidus, Adrenal supressant and Infantile spasms.
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#8 01-13-2012, 03:04 PM
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