My Inspiration

  

 I would like to introduce to you Sebastian Cook our newest member of our family.  Sebastian has been diagnosed with Emanuel Syndrome.Emanuel syndrome is a chromosomal disorder that disrupts normal development and affects many parts of the body. Children with Emanuel syndrome have weak muscle tone (hypotonia) and fail to gain weight and grow at the expected rate (failure to thrive). Their development is significantly delayed, and most affected individuals have severe to profound intellectual disabilities.The diagnosis of Emanuel syndrome is challenging due its rarity, lack of familial history and because the clinical features of Emanuel syndrome can also be seen in other syndromes. There are 200 reported cases and 500 worldwide. Sebastian's disability has driven me to work with families in educating others with this disability. Families suffer financially and emotionally in coping with their children development. So far Seby has had 2 open heart surgeries, he has one kidney, and has had ear plugs procedures done twice He's a been through a lot. You could never tell with that smile could you?