Desperate parents of a toddler diagnosed with a terminal brain tumour have turned down conventional treatments in favour of cannabis oil.
William Horne has been given a year to live after doctors found a cancerous mass ‘larger than a tennis ball’ wrapped around his brain stem.
The one-year-old, from Treherbert in Rhondda, Wales, was immediately rushed into surgery where medics removed 85 per cent of the tumour.
Doctors have strongly recommended he has chemotherapy to try and prolong his life expectancy.
But parents Tom and Kylie Horne do not want to put William through the treatment, which can be taxing on the body.
They have instead turned to unproven cannabis oil, against the advice of specialists.
William Horne, one, has been given a year to live after doctors discovered a cancerous mass ‘larger than a tennis ball’ wrapped around his brain stem
Medics have strongly recommended he has chemo and radiotherapy to remove the rest of the cancer and give him the best chance of life.
But parents Tom and Kylie Horne (pictured) do not want to put William through the taxing treatments which come with serious side effects
Mr Horne, 31, said: ‘In my opinion, rather than letting my son die, this is the only viable option for us’
Mr Horne, 31, said: ‘The early prognosis was that he probably has a year to live, based on the current state of the tumour and the cancer.
‘If we were to go for chemotherapy or radiation then it would prolong his life for about two, three, maybe four years.
‘But the level [of the dose] would be absolutely devastating and children with that lead no quality of life.
‘We don’t want to drag him through the mud and make him more ill than he already is. That would be sadistic and cruel.
‘Instead, if we can give him something that will help without causing any adverse side-effects, then that’s what we should do.’
Mr Horne, who runs a construction firm, said he has read online reports into the medicinal benefits of the drug over the past decade.
He said: ‘I feel like everything I have ever researched, looked at or learnt has led me to this moment. Maybe I will be a catalyst to change things.’
William was described as a ‘bouncy, happy’ baby by his family, but that all changed when he turned one.
Father-of-five Mr Horne said: ‘He had almost cold-like symptoms at first, then a bit of an upset stomach. Just normal illnesses.
William (pictured getting a kiss from mother Kylie) was described as a ‘bouncy, happy’ baby by his family, but that all changed when he turned one
He started showing ‘cold-like symptoms’ at first, then am upset stomach and loss of appetite
William (cuddling his father) was taken to the Royal Glamorgan Hospital in an ambulance when his health continued to deteriorate. A CT scan revealed a fast-growing cancerous brain tumour
‘Then after five or six trips to the GP William started developing a crooked neck. The doctor told Kylie that he had just been sleeping funny and sent him home.
‘But looking at the bigger picture, we knew something was really wrong here.’
William was taken to the Royal Glamorgan Hospital in an ambulance when his health continued to deteriorate.
A CT scan revealed he had a anaplastic ependymoma, a fast-growing tumour that affects children and teenagers.
There are less than 50 diagnoses every year in the UK and around 200 in the US. The survival rate is normally high, with more than 80 per cent of sufferers still living after five years. But William’s has spread to his spine and is rapidly multiplying.
Recalling the moment the family received the diagnosis, Mr Horne said: ‘The gravity of the situation was monumental. I’d never felt anything like it.
‘It was like the news blew all emotion out of me. I felt like a blank sheet of paper.’
At the University Hospital of Wales, a shunt was put into William’s brain to drain the excess spinal fluid overproduced by the tumour.
WHAT ARE EPENDYMOMAS?
A type of brain tumour made up of cancer cells and tissue found in the brain called ependymal cells.
These cells are found lining the fluid–filled spaces in and around the brain and their job is to produce spinal fluid.
The tumours grow rapidly and are relatively rare.
There are approximately 200 cases diagnosed in the US each year and less than 50 in Britain.
The average age of diagnosis is five years old and at least a quarter of diagnoses happen before the age of two.
In most cases the tumours are small and cause little or no symptoms, but in severe cases they trigger a host of problems including:
Loss of balance (known as ataxia)
- Problems speaking (known as dysarthria)
- Difficulty swallowing (known as dysphagia)
- Making overly clumsy movements (known as dysmetria).
- Their head seeming to be twisted or tilted (known as torticollis or wry neck)
He then went under the knife to have as much of the tumour taken out as possible. The procedure has left William unable to swallow, move his left side or open his eyes properly.
‘His eyes kind of flick to the side, but when I talk to him he clearly knows I’m there,’ Mr Horne added.
The father said the doctors looked ‘shocked’ when they expressed their desire not to give William the chemotherapy or radiotherapy and to go down the cannabis route instead.
‘A lot of people in our situation would panic [and go with the doctors’ advice] but I was so strong in my beliefs that I knew cannabis was going to work,’ he said.
‘In my opinion, rather than letting my son die, this is the only viable option for us. We need public support to help us get authorisation to use it.’
Medicinal cannabis was legalised in the UK last November, but there have reportedly only been two NHS prescriptions written.
A lack of clear guidance on how to prescribe it and issues over funding for the drugs has prevented many patients from getting the drugs.
Medicines derived from cannabis are not routinely available on the NHS because of concerns not enough research has been done into the benefits of THC.
THC is the main psychoactive ingredient in cannabis, which advocates claim is what helps the medicines combat crippling pain and seizures.
Mr and Mrs Horne believe it is the THC products which will help William.
But claims that cannabis or any of its derived compounds could have any helpful impact on cancer are unproven.
Professor Michael Barnes, a founder of the Medical Cannabis Clinicians Society and neurologist, stressed that while there are medical benefits to using cannabis oil, it does not cure diseases.
He said: ‘It is very useful as a treatment for conditions such as anxiety, pain and epilepsy in its own right and helpful as well in combination with the THC part of the plant for many other conditions including bowel problems (such as Crohn’s disease), appetite stimulation and fibromyalgia.
‘It is very safe and very effective for the conditions above and others. It is in many ways preferable to use a simple and safe medicine rather than a pharmaceutical product with many side effects.
‘However, it always wise to consult with a doctor before using to help with dose, etc.
‘Mainly it is a medicine that helps symptoms and doesn’t cure diseases. So that is important to emphasise.’
In response to William’s case, a spokesperson from Cardiff and Vale University Health Board said: ‘We are unable to comment on individual cases.
‘We always act in the best interests of our patients and their families. We would urge Mr Horne to get in touch with our concerns team to discuss this further.’