Our angel flew into this world on 8th September 2007. She was a beautiful ‘healthy’ APGAR score of 8! Phew, sigh of relief…….

After 2 weeks of difficulty feeding she made an involuntary visit back to special care to be tube redo after losing too much weight, the first sign that all was not as it should be……

Then milestone after milestone unmet, learning disability, hypotonia, sleep apnoea’s, but test after test coming back normal… Our ‘healthy’ baby is a SWAN (syndrome without a name).

This blog starts when she is 6, life is more settled but still with many challenges….