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Here you can find our latest news and updates on coming meetings and conferences. Please use the menus at the top of the page and on the right hand side to navigate. We are a member of Rare Disease UK. We are always in need of donations. If you would be kind enough to help us raise money for research into finding a cure, support our family meetings and attend our European and international symposiums on this condition please click here or click on the JustGiving button below.
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.
I'm Lucie Elizabeth Bailey. I was born on 14th November 1986 and I have Alternating Hemiplegia. I could sit up by myself at 8 months & started walking at 2 years 2 months. At 4 years old I started nursery school & moved into infants at 6. I was nearly 12 when I moved to high school. I attended a girl’s school for moderate learning for 5 years. I was able to pass a couple of exams 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.