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HLH

 

AMY HEPPELL

This story has been submitted by Caroline and Michael Heppell

 

Amy was born on the 28th July 2005 in Kings Lynn hospital at 5.25pm weighing 6lb 9oz. She soon had everyone wrapped around her little finger and even from day one she was a very contented and happy little girl. As she got older she would smile and wave at everyone making sure she was always the centre of attention in her cute little way. At sixteen months old Amy went to nursery for a couple of hours a week and she adored playing with her friends in the sandpit and splashing in the water pool.

On Christmas Day 2006,  Amy was taken ill at 18 months old with her first ever illness - a chest infection, but after a course of antibiotics she was back to her old self.  On the 7 March 2007 she was taken ill again for only the second time with what sounded like a sore throat as she sounded as if she had lost her voice.  That day we took her to the doctors who said she just had a virus but to keep and eye on her.  That evening we took her back to the doctors as her breathing was getting worse and we were given antibiotics and an inhaler, neither of which had any effect.  The following day after another visit to hospital, Amy ended up in intensive care in Addenbrookes for six days with a very severe case of croup.  Finally after six days she came off the ventilator and was transferred back to our local hospital in Kings Lynn. She then stayed in hospital for another six days before being allowed home.  Your browser may not support display of this image.

After five days at home she came down with a stomach bug and ended up back in hospital on a drip being re-hydrated, but was allowed home the following day.  As we were leaving hospital we pointed out a rash to the nursing staff who said they thought it was just heat rash and she would be fine.  Once home, the rash started to cover her whole body and within 24 hours we were back in hospital as they suspected Amy had Kowasaki disease.  Initial tests showed she had some degree of liver failure and she was started on treatment for Kowasaki disease which made her very poorly and her temperature started peaking at 40 quite regularly.  After 48 hours her liver function was getting worse and we were all transferred to King College Hospital in London.  We arrived there on a Thursday evening and on the Friday Amy had turned very yellow and we were advised that as her liver failure was so severe she had gone to the top of the EU transplant list for a liver, but we were also advised that she had a problem with her white blood cells that they were investigating and we should have the results back within 24 hours.  On the Friday afternoon Amy was transferred into PICU and we were told she was very poorly.  On the Saturday morning we were advised that Amy had the condition HLH and she was now too ill to receive a liver transplant.  We were advised that she had a 1-2% chance of survival but they did not expect her to make it through the day.  Amy died peacefully in her Dads arms at 12.15am on the Sunday morning following multi-organ failure.

Amy was a very special little girl with very special qualities. She was a happy, cheerful, smiley little girl. She adored playing to an audience and grabbed life with both hands. She is sadly missed by so many people that she touched with her sunny nature.