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Make Childhood Cancer Research a National Priority

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The Truth about Childhood Cancer

Around 1,600 children are diagnosed with cancer each year in the United Kingdom; that's 31 children every week.

Around 1 child In 500 in Great Britain will develop some form of cancer by the age of 14. The next child could be yours!

Frequently children are mis-diagnosed when they visit their GP, yet we know that early diagnosis is key to survival rates.

Cancer KILLS on average 330 children/teens per year in the UK


We Need To Do More Don't leave it to the Charities

We urge the Prime Minister and Government to take leadership roles by making childhood cancer research a national priority in the budget. In addition, we ask the Prime Minister to require the Secretary of State for Health to develop and implement a national plan for the advancement of childhood cancer research across all appropriate functions of the Department.

We also want the government to work with cancer charities to run public awareness campaigns for all cancer types starting by the inclusion into the National Awareness & Early Diagnosis Initiative (NAEDI) Public Symptoms Awareness Campaign.

Currently, most research is led by charities, and inevitably focuses on the more common cancer types, where great progress has been made. However, many of the less-common forms of cancers have been virtually ignored, with little or no progress being made over the last 25 years or more. We consider this unfair and unjust, and urge our government no longer to rely on smaller charities to fund and drive such research. This has to change with a sense of urgency.

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Save our Children from the horrific impact of cancer

It's not just about hair loss !!

Some children's cancers, such as Bone Cancer; inevitably end up resulting in life changing disabilities.

Eddy was diagnosed with a Bone Cancer called Osteosarcoma in August 2012 at the age of 4. He lost his left leg to this terrible disease and has since relapsed with the cancer spreading to his lungs (metastatic lung cancer). On two occasions, Eddy has had surgery to his lungs to remove this cancer.

There are not many treatment options left for Eddy. There may come a day where any new lung nodules are not resectable, meaning his chances of long term survival are slim. This is down to the simple fact that not enough research has been carried out for this type of cancer. Long term survival rates have not changed for over 25 years.


The GOLD Ribbon is for Childhood Cancer

Ask many people what a pink ribbon represents and most can tell you.

Ask what a GOLD ribbon represents and most do not know. We need more awareness !!

September is Childhood Cancer Awareness month. Please make a special effort to promote awareness during this month.


Chemotherapy! As if Cancer wasn't bad enough

Archie was first diagnosed with leukaemia in 2006 and has endured 4 years of chemotherapy, total body irradiation and cranial radiation, all of which have left him with many nasty long term side effects due to the toxicity of treatment, he nearly lost his life on numerous occasion and has had to undergo 3 lifesaving bowel operations and neurosurgery. He has suffered heart/eye complications and fought endless other infections/viruses such as swine flu and parvovirus.

In 2012, Archie's cancer returned and he underwent a stem cell transplant. Again, this has caused so many horrible side effects which will stay with him for the rest of his life. Over the last 7 years, we have met so many amazing families whose children have lost their battle with this awful disease. Many of those that do survive are left with life long side effects, both physical and emotional. Clearly, the government could do so much more by funding ALL childhood cancer research. But not forgetting the support during and after the child's treatment such as educational and follow up care.

Archie was failed by his GP 3 times before his Mum finally diagnosed him via google!!!


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Rare Cancers don't get the research

Abbey was 22 months when she was diagnosed with Choroid Plexus Carcinoma, an extremely rare and very aggressive malignant brain tumour.  Abbey received 12 months high dose chemotherapy followed by brain surgery to reduce the main tumour.  However, surgery left Abbey with brain damage with resulting disabilities and now struggles to control her body temperature, weight, fluid, salt levels, walking, and sleeping.  Her communication abilities have also suffered.  Abbey still has huge battle ahead of her.  But with five brain tumours, cancer cells covering her brain and spine, there is little more the doctors can try.

It is hard to understand why children's cancer is so underfunded.  Brain cancer is one of the biggest childhood cancer killers, yet attracts a low percentage of funding for vital research.

For many Doctors, they will only see a handful of children with a brain tumour and are generally unaware of the signs and symptoms.  This leads to mis-diagnosis thus delaying that crucial treatment.  If more research and awareness was carried out; misdiagnosis could be a thing of the past and children like Abbey could be saved without all the associated complications.  Rare cancers do occur and unfortunately do kill our children.


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Missing the Obvious awareness is crucial

Logan was born with a cleft lip and palate and had two corrective facial surgeries before reaching 9 months of age. This meant he was under the watchful eye of the doctors since birth.  At six-months-old, concerns were raised about the size of his stomach.  Diagnosis was this was a "baby" tummy; nothing to worry about.

One week after Logan's first birthday concerns were raised again with another visit to the GP. They thought Logan's spleen had ruptured and he was rushed to hospital. After further examinations, we were told it wasn't an organ causing the problem. It was a foreign body – probably Cancer! It was found to be Wilms' tumour (cancer of the kidney).  He would have had this since birth.

Logan received 7 weeks of chemotherapy followed by surgery to remove the kidney and tumour. However; 8 months later, Logan relapsed. The cancer had spread and underwent surgery to remove the tumour from his testicle and stomach lining, followed by a further seven months of intense chemotherapy and 14 days of radiotherapy.


A Personal Message why this Petition

In August 2012, my four-year-old son Eddy, was diagnosed with osteosarcoma, a rare form of bone cancer. We were devastated to hear such news. Our world had suddenly changed to one where we wake each day fearing for our child's life. Spending most days watching him suffer from the effects of chemotherapy. Making a simple task of eating his favourite food near impossible. Looking into those sad eyes of his, questioning our own sanity as to why we make him suffer this way. We try to convince Eddy this was to make him better, but the truth is we simply didn't know.

As a family we continued to learn as much as we could about the nature and treatment of childhood cancer, and were shocked at what we discovered. We have met many families on our journey, forging close relationships with them. However, far too many children have already lost their battle, mainly those who have a less-common form of cancer.

I want to try and make a real difference; give all children a fighting chance to survive irrelevant of which cancer they may have. But I cannot do this alone. So I ask your help to urge our government to do more for our children instead of relying on the charities, especially for those who have a rare cancer type. I also want more public awareness campaigns for the simple fact that early diagnosis is key to survival.

A child does not choose which cancer he or she has… so why is research into childhood cancer so selective? It is time the government took a lead and made it a national priority to reduce the toll on our children of these terrible diseases. So please take 2 minutes of your time to sign the petition and help drive crucial research to save our children.

Yours Sincerely, Jon Parry

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