Less than 20% of those diagnosed with a brain tumour survive beyond five years
Spider-Man mask will give little Harry superpowers as he battles brain tumour
A six-year-old boy diagnosed with a potentially lethal brain tumour is undergoing treatment dressed as Spider-Man, his favourite superhero.
Harry St Ledger has a very rare type of tumour similar to a diffuse intrinsic pontine glioma (DIPG) which has an unbearably stark prognosis and very limited treatment options.
The little boy, from Portchester, has had a radiotherapy mask decorated with the features of Spider-Man and will wear it as his treatment gets underway at University College Hospital, London, today (Wednesday 14th March). Harry and his mum Fiona Lear, 46, will stay in London while he has treatment five days a week for six weeks.
Fiona said: “This may well be the only treatment option open for us and we know that not all children respond. After that the pathway is, sadly, one of rapid deterioration and the average survival time after diagnosis is just nine to 12 months. At this stage we cannot begin to think what may lie ahead if this doesn’t work.”
Harry and his businessman dad Cairan St Ledger, 31, who runs HSL Outdoor Cleaning, are avid Pompey fans and season ticket holders. They were at Fratton Park at the weekend and the family has had “wonderful” support from the club with a home visit from Harry’s favourite players Conor Chaplin and Kal Naismith.
The little boy who, along with sister Emonie, eight, is a pupil at Castle Primary School, was diagnosed last week after being struck down by an ear infection early in the New Year. An MRI scan prior to what should have been a straightforward procedure to fit a grommet in his ear revealed an anomaly in his brain. Harry – know to his family as Harryboy – was originally treated at Queen Alexandra Hospital at Cosham and then at Southampton General Hospital. But his radiotherapy will have to take place in London and the family believes this is because of a shortage or radiographers locally. Harry has autistic spectrum disorder (ASD) and finds it hard to communicate with others and his family face the additional agony that this may complicate his treatment, particularly as he will be away from his familiar home environment.
Fiona said: “I am shocked to learn that brain tumours are the biggest cancer killer of children and adults under the age of 40, yet so many people still think it is leukaemia which is killing more of our precious children than any other form of this hideous disease. I am angry to think that Harry will have to live away from the security and comfort of his own home during treatment as being able to sleep in his own bed and have his own things around him every night would be such a comfort. I am frightened to think of what lies ahead, of what affect the radiotherapy will have on him, of how he will feel dreadfully sick yet extremely hungry due to the steroids which he must take to control the swelling in his brain.”
Harry’s family are working with the national charity Brain Tumour Research which funds a network of Centres of Excellence, including its flagship at the University of Portsmouth, where scientists are focused on improving treatment options and, ultimately, finding a cure for brain tumours.
The charity’s Research Manager Katie Sheen said: “DIPG is a specific type of brainstem glioma which usually occurs in children between five and seven, it makes up 15% of all brain tumours in young children. The cells infiltrate the surrounding nerves and are very difficult to remove surgically therefore the treatment that is available is limited. The standard treatment is radiotherapy which can improve symptoms in the short term.”
Brain tumours are indiscriminate; they can affect anyone, at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease. March is National Brain Tumour Awareness Month culminates in Wear A Hat Day on Thursday 29th when individuals, families and businesses across the UK will help raise funds to fight this dreadful disease.
To get involved, or donate, please visit: www.wearahatday.org
Or text HAT to 70660 to donate £5*
* Texts cost £5 plus network charge. Brain Tumour Research receives 100% of your donation. Obtain the bill payer’s permission. Call 01908 867200 with any queries.
For further information, please contact:
Susan Castle-Smith at Brain Tumour Research on 01908 867206 or 07887 241639 or Susan@braintumourresearch.org
Notes to Editors
Brain Tumour Research is the only national charity in the UK focused on funding sustainable research to find a cure for brain tumours. We have established a game-changing network of world-class Research Centres of Excellence in the UK. Embracing passionate member charities nationwide, over £6 million was raised towards research and support during 2017.
We are campaigning to see the national spend on research into brain tumours increased to £30 - £35 million a year, in line with breast cancer and leukaemia. The unprecedented success of our 2015 petition led to the 2016 Westminster Hall debate and Brain Tumour Research taking a leading role in the Government’s Task and Finish Working Group convened to tackle the historic underfunding for research with the report being published in 2018.
Key statistics on brain tumours:
- Brain tumours kill more children and adults under the age of 40 than any other cancer
- They kill more children than leukaemia
- They kill more men under 45 than prostate cancer
- They kill more women under 35 than breast cancer
- Just 1% of the national spend on cancer research has been allocated to this devastating disease
- In the UK 16,000 people each year are diagnosed with a brain tumour
- Less than 20% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers
- Brain tumours are indiscriminate; they can affect anyone at any age
- Incidences of, and deaths from, brain tumours are increasing
Please quote Brain Tumour Research as the source when using this information. Additional facts and statistics are available from our website including our latest Report on National Research Funding. We can also provide case-studies and research expertise for media.