At the start of 2011 our son Owen was like any other 4 year old, full of life, fun and excitement. In mid-January, when he was just about to start school, he became unsteady on his feet and the left side of his face dropped. Our GP advised us this could be a reaction to pre-school jabs.

Still concerned, we took Owen to University Hospital Lewisham A&E where he was admitted for further tests; he was given a CT scan which revealed - a brain tumour. That evening we were taken by ambulance to King’s College Hospital and the next morning Owen had an MRI scan and was then diagnosed with a malignant brain stem tumour called Diffuse Intrinsic Pontine Glioma (DIPG). We were told that the location of the tumour makes surgical removal impossible and that it is incurable. DIPG affects up to 40 children per year in the UK with an age range of between 5-10 years, it is aggressive with a survival rate of between 9-12 months.

Owen was then referred to University College London Hospital for 6 weeks of radiotherapy. Radiotherapy is used in an attempt to shrink and/or stabilise the tumour, although in nearly all cases of DIPG this is temporary and within months the tumour starts to grow again.

Upon completion of radiotherapy we were then taken under the care of Royal Marsden Hospital in Sutton where Owen had more MRI scans. In June we received the good news that the tumour had stabilized and there was a brief respite leading to Owen's fifth birthday on 24 July; this was a hugely emotional milestone in the year for us. However, in mid-August we were told the tumour had started growing again, new brain lesions had formed and that Owen only had weeks to live.
 
At this point the months of journeys to, and extended stays in, hospitals and the painful procedures that Owen bravely endured were over and as Owen’s condition cruelly deteriorated we realized that where we lived was far from suitable for end of life care. We agonized on how and where Owen should spend his last days and when given a recommendation for the Demelza Children's Hospice in Eltham we were very unsure what to expect. An initial visit immediately convinced us that Demelza were far more equipped to deal with the situation than we could ever be at home.

On Saturday 24th September Owen slipped into unconsciousness and the following day we took him to the Demelza Children's Hospice. The care, support and compassion we received during this period were truly overwhelming, not only for us, but for Daisy our 7 year old daughter and all our relatives.
 
We stayed at Owen’s side for the next three weeks, and our beautiful, brave boy passed away peacefully at 2:55am on the 16th October with us at his bedside. We stayed at the hospice, with Owen at rest, for another week and were advised on funeral arrangements and other necessities which we would otherwise have found impossible.
 
Demelza continue to support us now and have made us feel part of their family.

We can never repay them for their kindness and care, but would like to raise money for them as they are a charitable organisation relying on donations. So could you please make a donation to this truly deserving hospice?

Many thanks,

Steve and Janine