Meet

Emma Miles

Emma was first diagnosed while still in utero with spina bifida, bilateral club feet and Arnold Chiari II. We therefore also expected a neurogenic bladder and bowel and little function of legs.

However, at about 4-5 months of age and after questionable seizure activity and many tests was diagnosed with agenesis of the corpus callosum, infantile spasms, microcephaly, hypotonia, risk of aspiration and reflux. After a course of ACTH, the infantile spasms left and were then 'replaced' with 20-30 seizures per hour of four different types. So far clobazam and valproic acid have been unsuccessful at reducing these seizures. We are waiting approval to begin the ketogenic diet in 2009.

Genetists suggested that Emma may have Aicardi Syndrome just before she was a year old, although many of her specialists disagree with this diagnosis because she doesn't have the characteristic eye lesions common in other Aicardi girls. As far as I am concerned, it has been a very 'useful' diagnosis as she clearly has lots in common with these girls and until we are told that there is a different 'label' that describes her set of conditions better, then we belong to this family!! 🙂

Emma has an older brother, Ben, and a younger brother, Will.

**Will write more soon!**

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