Amelia is 4 - date of birth 2nd June 2008. She started developing a noticeable wobbliness, shaky left hand and gradual lack of coordination over a fairly long time - we think since around September last year - which for a while we attributed to a developmental problem. It got worse, and looking back through photos of her we noticed her constantly clenching her left hand in a fist. She kept falling over and was generally very unsteady. Several trips to the doctors and a blood test proved inconclusive but it was getting worse, so we had her referred to a paediatric consultant at our local hospital (Royal Berks in Reading). She was seen on the 30th January and sent for an MRI scan the next day. We were told the news a few hours afterwards that she had a brain tumour, and discovered the next day (1st Feb) that it was a fairly large brain stem tumour. A few days later we were transferred to the John Radcliffe Hospital in Oxford who have a dedicated neurology department at the Children's Hospital.
A second MRI of her spine showed no tumour advancement to this area, and she was then operated on, on Monday 6th February by Mr Peter Richards of the John Radcliffe Hospital, who has been a neurosurgeon for some 30 years - working on children for 16 of those years. He sees around 5 cases a year of this type and we understand around 40 kids a year in the UK are diagnosed. The operation had two goals - one was to biopsy the tumour, which produced 4 tissue samples during the operation. The second was to try and remove any tumour other than the samples - which they were unable to do.
After several days we were told that the samples showed a grade 2 diffuse astrocytoma, indicating that the core of the tumour was likely grade 3 or 4. We were then told that there was no chance of survival of a tumour of this type.
and radiotherapy were offered, however we were told that
a median increased survival of some 4 weeks was achieved
after this treatment. We declined with the reason that
we would rather spend quality time with our daughter
than spend more weeks in hospital for such a dismal
outcome. Amelia came home on Friday 10th February.
Amelia returned home unable to walk, she had speech
problems, she was half paralysed and generally in a very
The Burzynski clinic has a remarkable success rate with tumours of this type (and others) and Amelia is doing incredibly well so far, especially considering she has had no other treatment. The tumour stabilised (stopped growing), and stayed stable for several months. Sadly it then began to progress and we are now under palliative care as Amelia's life fades away.
Due to the generosity of many thousands of people, we raised over £200,000 in 12 weeks to pay for the treatment. It is due to that generosity and our unending determination that Amelia is showing us all how we should never give up and we should always remain positive, even in the worst of times.
Thank you for visiting us, reading our story, and sharing in our hope.