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Real Life Stories! |
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Dear Michelle and Mary,
My son Paul Metsala, age 16, was born with a rare disorder called
Rubenstein Taybi Syndrome. Rubenstein Taybi Syndrome is a genetic
disorder-cause unknown. They believe that there is a mutation
in a gene which is to small to be detected.
Along with extensive mental and physical delays, one of the
main characteristics of this syndrome is the inability to verbally
communicate needs in a manner that could easily be understood.
Paul uses a communication device which speaks for him and along
with his use of sign language and others who know him, he is
able to make his needs known. He is able to hear and understands
everything. He can speak a few words like his name, mom, yes,
no etc.
Due to these severe speech defects and the rarity of this disorder,
without proper identification alerting emergency personnel to
his condition, it would be extremely difficult to treat him.
This "More About Me Kit" is a great idea. I have shown
it to other mothers of special needs children and the school
where I work is thinking of putting this information in our
parent news letter next month.
Thanks Again! Cecilia Tollers |
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2003 More About Me