Taylor’s condition is known as a “Complex Syndrome” or an “Undiagnosed Syndrome”. It can be very frustrating at times when we are asked what he is suffering from, it is quite list: • Craniosynostosis • Microcephaly • Sensory Processing Disorder • Development delay • Speech delay • Extensive vertebral body anomalies • Inner ear structural anomalies • Dysplastic ears and facial asymmetry • Sight loss • Strabismus • Coloboma • Growth deficiency • Swallowing abnormalities • High arch palate • Low muscle tone • Low immune system • Mobility issues • Cryptorchidism • Sensorineural & conductive hearing loss It would make things so much easier if his condition had a name. Unfortunately medical technology in Australia is not advanced enough to test every gene in the human body. We are patiently waiting for his tests to be screened at ‘Care for Rare’ in Canada – it could take months for the results to come back and then there is only a 20% change of a diagnosis. Taylor has endured such a long journey in his life so far and has a long road ahead or him, despite all of this, Taylor has never stopped smiling!
Posted on: Tue, 13 May 2014 04:53:21 +0000
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