On 4th December 2013 my family and i were told that Lucy had only days to weeks to live, Lucy had been in Great Ormand Street Hospital since 18th October 2013 she was admitted to Badger Ward for management of increased oxygen requirement and worsening joint pain had been lethargic at home and had respiratory distress.

She was treated with various drugs, but remained on a high oxygen requirement and had to be started on optiflow to deliver humidified high flow oxygen, one drug helped the joint pains but didnt not improve the oxygen requirement and she was needed 90-100% oxygen.

Unfortunately she had an acute deteriration on the 1st December with increased temperature and failure to keep saturations above 90% she was admitted to PIC overnight.

A decision was made with the respiratory, intensive care and pallitive care teams that Lucy is not for intubation, ventilation in the event of a further deterioration, she will continue on optiflow as before and she is not for resuscitation in the event of cardiorespiratory arrest and she is not for consideration of lung transplant.

On the 3rd December l decided Lucy would feel most comfortable in Demelza Childrens Hospice as they know Lucy and my family well, Lucy was then detoriating fair quickly and was then in a terminal phase of her illness.

They gave me 4 months of beautiful memories with my daughter who passed away in her sleep she was our pink princess she brought so much happiness and laughter to my family and all who worked there and she touched the hearts of everyone and i would like to thank the care team and the family support cause without them i dont know where i would of been today and i want to give another family the chance to have what we had.

I just want to tell you a little about Lucy was a small girl with a big heart and a big personality, she was beautiful, funny, cheeky and a very loving girl and everyone who met her fell in love with her straight away, i feel truely blessed that i got to spend the last few months with Lucy and my family in demelza and i will miss our time together so much. Lucy was the brightest ray of sunshine and was loved by everyone, she was full of fun and cheekiness and she kept me on my toes, i loved her giggles and never ending sense of fun but most of all her enthusiam for her doing her best at everything, Lucy loved to be the dancing queen and now my Lucy is a special angel in heaven.

Based on information supplied by Lynn Baker.