Back in June 2014, Emily was diagnosed with a rare form of brain tumour, a craniopharygioma. It came as a shock to us, her parents, family and friends. She developed symptoms over what seemed to be only a matter of weeks - poor eyesight, headaches and unexplained weight gain. It was only as a result of an eye appointment that we were told to take her straight to the paediatric A&E department at St Mary's Hospital, Paddington, who then referred her straight onto Great Ormond Street. That was on a Saturday, and the following Monday she underwent surgery at Great GOSH which saved some of her eyesight and certainly saved her life.
From that time onwards, Emily has been in the best possible hands at Great Ormond Street, looked after by a whole team of world-leading paediatricians. It was decided that surgery to remove her tumour was too dangerous, and that, similarly, conventional radiotherapy in such a high dose could cause significant brain damage at her young age. So it was that Emily was referred to have proton beam therapy in Jacksonville, Florida. The two months she spent in the USA was a difficult time; Emily became very unwell, requiring further neuro-surgery, suffering from seizures and spending a period in intensive care. However, the proton beam treatment worked, shrinking the tumour away to almost nothing. We all have so much to be thankful for.
Since then, life has not been plain sailing for Emily. Whilst the tumour itself is no longer a worry thanks to the proton beam therapy, there have been many residual issues with which to contend: significant loss of eyesight; complicated endocrine issues requiring daily hormone replacement medication; tiredness and fatigue making life at school considerably harder than it is for most children.
In March 2016, Emily suffered a stroke, caused by damage to blood vessels in the brain from the proton beam therapy - a known possible side-effect of this life-saving treatment. Incredibly, having initially lost speech and movement on her right side, Emily made a good recovery. Further surgery at GOSH by the neuro-vascular team has helped improve blood circulation in her brain, and fortunately she has not suffered any such severe attacks since that time.
Over the past four years, since this all began, we have got to know Great Ormond Street, not only as just a hospital, but as somewhere very special that has offered us all an incredible amount of support through difficult times. We have been privileged to meet so many remarkable people: doctors whose skill and expertise have done so much for Emily; nursing staff who have gone the extra mile to make our stays in hospital that much more bearable; play workers and volunteers who are there to help with a smile on their face.
Spurred on by all this wonderful work, Emily's Dad, Ashley, signed up to run the London Marathon for GOSH in April 2015. Thanks to an incredibly generous response from so many people, he was able to raise over £20,000 for this important cause. This has been repeated each year since, with the total raised after the 2017 marathon standing at over £56,000.
In April 2018, Ashley will run the London marathon again, only this time as Bernard the Bear, the mascot of Great Ormond Street Hospital.
Emily's Aunty, Helen, is a doctor herself and also a keen runner and cyclist. She is doing the Prudential London Ride 100 race in July 2018 to raise further funds for GOSH.
We continue to be so grateful to GOSH for everything they have done for Emily. It is a great blessing that she is still with us and that she enjoys life so much. Every little we can raise to help GOSH in their work with other children and families is only a small token of our gratitude to this special hospital.
Thank you all for your support.
