A mum whose son suffers a rare condition that leaves him with an 80 per cent chance of getting cancer is calling for better screening after being told the NHS will only screen his brain.
Little Billy Murphy was diagnosed with a rare cancerous brain tumour called choroid plexus carcinoma when he was just seven months old, before going into remission in May this year.
His family were dealt the devastating blow that Billy, who is now 16-months-old, was also suffering Li-Fraumeni Syndrome – a rare inherited genetic cancer disorder that greatly increases the risk of developing cancer.
But mum Jenny Murphy, 36, says that after hearing the news the family were then told that the NHS would only give him further screening on his brain and not the rest of his body.
The NHS says screening on other parts of his body could damage his health further due to radiation that is emitted during screening like CT-scans.
Now a devastated Jenny has set up an online petition, which demands that the NHS offers extra screening for people with a cancer disposition like her son.
Jenny, who has four other children, said: “I think it is wrong – he deserves a chance to live. I do not know why they can’t provide cancer screening because if they could it would cut out all the costs of chemo. It would be more cost effective for the NHS to catch the cancer but they are leaving it up to us to catch the cancer.
“If you have an eye condition then you have an eye test – so if you have a cancer disposition then you should have screening.
“I feel like it [Billy’s cancer] is a ticking time bomb and we are just waiting for it to go off. They way it is we might get to the point where we have go through chemotherapy again.
“I just find it very, very hard to understand. The simplest of MRI scans and ultrasounds could prevent it.
“I want him screened for the rest of his days because if you have a cancer disposition, there is always a risk.”
When the family heard Billy had Li-Fraumeni Syndrome, which means his body has less ability to fight cancer, they were completely devastated.
Jenny said: “We had just seen him fight a brain tumour and then we found out this news – I just couldn’t believe it.”
Jenny and her partner Craig Moss, 30, who is a landscape gardener, noticed that Billy was losing the strength in his legs at seven months old.
He was taken to Arrowe Park A&E, in the Wirral for a CT scan and he was then taken to the Alder Hey Children’s Hospital in Liverpool with a suspected brain tumour.
Billy was diagnosed with choroid plexus carcinoma and given a 25% chance of survival.
Six days after Billy was admitted to A&E, surgeons removed his tumour and started a 6-month course of chemotherapy.
Billy went into remission in May and his family were so elated by the news that they went to a beach to release balloons to celebrate.
But just a week later, doctors tested Billy for a cancer predisposition and discovered he has Li-Fraumeni Syndrome.
So far Jenny’s petition has received just over 500 signatures and if it reaches 100,000 MPs will be forced to debate it in parliament.
And Jenny, who lives in Prenton, the Wirral, said that she will not give up her fight if the petition is not a success online.
She said: “If I can’t get anywhere this way, I will try another way. If the petition doesn’t work online I will stand in the town centre getting signatures. I am not going to give up.”
The Li-Fraumeni Syndrome Association, which raises awareness about the condition, does not currently have a standard screening recommendation for sufferers.
A spokesperson for the NHS said that there is substantial evidence that Li-Fraumeni Syndrome patients may have an increased sensitivity to ionizing radiation which is used in cancer screening.
The spokesman said: “We have great sympathy for any family facing this difficult situation. Clinical experts always recommend the safest and most thorough follow up and surveillance plans for survivors of cancer, taking into account all detailed aspects of the patient and their condition. Exposure to radiation through medical tests such as CT scans is closely controlled to avoid creating additional risk for the patient.”
To sign Jenny’s petition visit the www.change.org website and search for Li fraumeni syndrome.
