Updated November 2011
Hello, Thank you for visiting our Just Giving page in memory of our Daughter Lily and thank you to all who have supported us and contributed to the collection for COSMIC.
Louise and myself want to continue to support COSMIC and their good work for Children's Intensive Care and we are going to take part in the Santa Run at Greenwich Park on the 4th Decemeber, to run in memory of Lily to mark her 1st Birthday on the 30th November.
We are still in contact with St. Mary's and Great Ormand Street Hospitals and the doctors are still trying to work out what caused Lily to get so sick. It is the support of family and friends that has helped us to be strong through this difficult time.
Thank you again for your support.
Martin and Louise.
Updated - June 2011
Thank you for visiting this site that we have created in memory of our much loved daughter - Lily.
Lily's Funeral will be taking place at 12pm on the 8th June and we would appreciate donations to the charity for the Children’s of St Mary's Intensive Care (COSMIC), in place of flowers.
Lily unfortunately became unwell towards the end April 2011 when she caught Chicken Pox; she had a particularly severe reaction to the virus and would not take her feed. We took her to Queens Hospital Romford; where she continued to deteriorate, then needed to be transferred urgently to the St Mary’s Hospital in London to the specialist Children’s Intensive Care Unit.
On arrival to the Intensive Care Unit she was placed on a ventilator and they started to treat her with Antibiotics and Antiviral medicines. As the days and weeks passed we learnt more and more about Lily’s condition. Not only did she have a severe reaction to the Chicken Pox, they found she had Pneumococcal, a bacteria infection of the lungs, this had entered her bloodstream and caused septicaemia, from the toxins that are created as the bacteria was killed off by the medicines. After 10 days of being on the ventilator and sedated, she started to show the first signs of improvement and the settings on the ventilator where able to start being weaned down.
As her lungs improved the Doctors could still not understand why Lily’s blood count levels were not coming under control and continue to need blood and platelet transfusions, so they carried out Bone Marrow Biopsy, this revealed a condition called HLH, which is an over active immune system, that means she was breaking down her good infection fighting cells, which means she could not effectively fight the infections. Treatment for HLH is Chemotherapy drugs, which were started right away. Long term treatment to cure HLH would require a Bone Marrow transplant, which would be massive ordeal and difficult to get through.
Lily continued to improve on the ventilator and was almost ready to be taken off and have the breathing tube removed. But concerned about some of the ultra sounds that had been done on Lily’s brain the Doctors wanted complete a CT Scan. This brought us more sad news; there were abnormalities throughout the scans and they needed to then carry out a Lumber Punch and an MRI scan. The lumber punch revealed that there was evidence of Chicken Pox virus in the spinal fluid, which had probably caused Encephalitis, hence the increased fluid seen within the brain on the CT Scan.
A few days later she went for her MRI Scan, and initial feedback from the consultants was Severe and Global damage. Lily continued to improve on the ventilator and she was able to have the breathing tube removed and was only needing some support with oxygen into her nose, other than that she was breathing on her own. The third morning of breathing on her own Lily had a seizure and her breathing again declined. The Neurological Consultant then came to speak regarding the results of the MRI – they said the damage was extensive throughout the brain, and that she would not able to communicate or function in anyway normally. There was also damage to the brain stem, which controls her vital signals for her breathing, heart rate and temperature. Lily continued to decline through the day with her breathing sometimes stopping for a few seconds. Lily then fought on for further 20 hours and sadly passed away in her Daddy’s arms at 12pm on the 26 May 2011, 4 days before she would of been 6 months old.
These donations will go to help fund the good work of the Children’s Intensive Care Unit at St Mary’s and is a way in which we can show our appreciation to the Nurses and Doctors in the unit for all the hard work and support they gave us in order to give Lily the best chance of life, but sadly she just had to many battles to fight.
Little Lily Hawker will be forever loved and forever missed by everyone, especially her Mummy and Daddy.
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