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September 16, 2017
2 months and 6 days since
the event.
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Aidan was born on May 10, 2012, the youngest of our three sons.  He’s been quite the surprise from the beginning and has kept us on our toes from day one.  Aidan had delays in hearing and speech; by the time he was 18 months old he could only say ‘momma’ or ‘dada’.  We started with Birth to Three, a program that comes into the home and give speech, cognitive and developmental therapy.  After two years of preschool and some noticeable other delays in behavior, it was suggested that we have genetic testing done. 

In March 2017 we received the results, much to our surprise, as we were expecting a diagnosis of autism, Aidan was diagnosed with a rare genetic disorder called Sanfilippo Syndrome Type A, which affects 1 in 70,000 children.  Sanfilippo is a rare change in the DNA that causes an important enzyme to be made improperly.  Because of the lack of this enzyme, Aidan’s body cannot breakdown and recycle natural cell waste, so in a nut shell, his body is becoming clogged with toxins that he cannot breakdown and flush out.  Sanfilippo Syndrome is known as Alzheimer’s for children, eventually robbing him of his knowledge, memory, mobility, hearing and speech.
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