Friday, 18 November 2011

CDKL5 UK Launch!


Last Saturday I had the honour and privilege to launch CDKL5 UK at the Rett UK Family Weekend in Northampton.  Amazing!  Not only did I meet the most amazing families and carers, with their loved ones that are living with Rett Syndrome, a condition similar to CDKL5, but I also was fortunate to meet some new families to me that are living with CDKL5 in the UK.  Along with the Dr Hayley Archer, the geneticist based at Cardiff University Hospital that diagnosed us all, I presented, what I hoped was an information talk on what research the International Foundation for CDKL5 Research is currently undertaking.  Also I was able to launch CDKL5 UK along with Sarah, my co-parent in this endeavour.  I have met around 14 families now living with CDKL5 and I am constantly struck by the shear love, dedication, and the beauty of the families, but also how the siblings of these special children react independently with such uniqueness and compassion to not only their sibling but also the other children living with this condition.  CDKL5 UK is so lucky to have such a special band of parents that are dedicated in uniting together for a common cause, to fundraise for CDKL5 UK and for the International Foundation for CDKL5 Research.  We are able to share the highs and lows, and have a family bond that is so hard to describe to an outsider because we have this commonality with our children.  It was amazing to see some families fall into their rightful place in society because they had the opportunity to meet families living in a similar way, if that makes sense ;)

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