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We all have our stories to tell, maybe some of ours can help you.
Joanne was born in august 1986, at 3 weeks while being bathed she had some funny eye movements that lasted a few minutes she had already had some stiffness but this was explained as normal reflexes in newborns, but the eye flickering concerned me so I took her to the doctor who then referred Joanne to a paediatrician.
My name is Lucie Elizabeth Bailey. I was born on 14th November, 1986 and I have Alternating Hemiplegia. I have experienced many things in my life. I could sit up by myself at 8 months and started walking at 2 years and 2 months. At 4 years old I started nursery school and moved into the infants at 6. I was nearly 12 when I moved up into high school. I attended a girl’s school for moderate learning and spent 5 years there. I was able to pass a couple of exams at Welsh Grade but my greatest achievement was being awarded The Princess Diana Award for Outstanding Achievement.
Luke has a severe form of AHC with drug resisistent epilepsy. He has regular 999’s for his severe and life threatening tonic clonic seizures and is no longer for resuscitation. He has a gastrostomy for feed and hydration for his almost daily AHC attacks lasting minutes/hours/days or weeks. He lost the ability to walk 2 years ago.
Oliver was born in January 2012 but wasnt diagnosed with AHC until August 2014. He has had several visits not only to his local hospital but also to GOSH in London. He has a gastrostomy for feed and hydration as he quite often refuses to eat or drink.