Beautiful baby Amelie was born on 27th November 2012 and was only with us for five short, but very happy weeks, until she passed away on 2nd January 2013.  We are so proud of the strength and fight she put up against the cruel and rare genetic condition Herlitz Junctional EB. 

We will forever remember Amelie's huge, gorgeous eyes, which caused everyone she met to fall in love with her, her happy, playful, contented nature, and so much more that we can't begin to put into words.  Amelie was our special baby girl and will be in our hearts every day.

We were supported throughout by the specialist team based at Great Ormond Street funded by the DEBRA charity. They were fantastic and an inspiration; we are truly thankful for everything they did for us.  There is currently no cure for EB, but we pray that through the research funded by DEBRA, one will eventually be found so that no child has to suffer the agony of EB and that no families have to experience the heartache caused by it.