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Wednesday 13 December 2017

‘No family should be told you need €300k to try save your child in the US’ – Family whose young son died after battling cancer three times

Conor battled cancer three times

John and Margaret Foley with children Conor, Emma and Rachel
John and Margaret Foley with children Conor, Emma and Rachel
Catherine Devine

Catherine Devine

A father is pleading with the public to help fundraise money for cancer research rather than “scaremongering” parents into raising hundreds of thousands of euro to travel to the US for paediatric cancer treatments.

John and Margaret Foley from Co Meath watched as their "beautiful and happy" son Conor battled a rare childhood cancer called Neuroblastoma three times before he sadly passed away in 2015 at the age of 17.

Conor was diagnosed with Neuroblastoma age 4
Conor was diagnosed with Neuroblastoma age 4

“Conor was four-years-old when he was first diagnosed with stage 4 Neuroblastoma. It is such an indescribable shock as a parent to be told that your child has cancer,” Margaret told Independent.ie.

“Our life as a family was turned upside down.”

Conor’s family did everything they could to help their young son battle the rare childhood cancer.

Over the next two years he underwent intensive treatment which included six months' chemotherapy, a bone marrow transplant and 25 radiotherapy sessions, followed by another six months of intense treatment.

“Seeing our child, our gorgeous son, being pinched and crying - it’s just so hard. As a parent, every bit of your instinct, of you, wants to protect your child and keep them safe and yet, you have to rail against that instinct and allow this to happen to them. You know it has to be done to beat this cancer but it’s awful,” said Margaret.

Conor was given the all clear and after ten years in remission the family felt as though they had won the battle against cancer.

John and Margaret as well as Conor’s two older sisters Emma and Rachel were left devastated when Conor’s cancer returned for a second time in 2014.

“Life was getting back to normal. You always have that worry at the back of your mind, but Conor was doing well. He started ticking off the milestones.

Conor with mum Margaret and sisters Emma and Rachel
Conor with mum Margaret and sisters Emma and Rachel

“His first communion came and went, he was in 5th class and we were getting him ready for secondary school. He had been 10 years cancer-free but 10 years to the day he relapsed. He was 14-years-old.”

Margaret said that “devastated“ doesn’t even begin to describe how she felt.

Conor began intense cancer treatment again at Our Lady's Children's Hospital Crumlin.

“The world wide centre for paediatric oncology were knocked for six, but the oncology team of St John's ward did their absolute best to save Conor’s life for a second time and they did as they got Conor back into a cancer free status with no evidence of disease after two and a half year’s treatment,” dad John told Independent.ie.

“We did everything for Conor. He tried world-wide treatments and technologies but unfortunately it recurred for a third time in the November 2014.”

John said that Conor pioneered worldwide cancer treatments in the hope of finding a cure, but never had to leave Ireland.

Conor Foley who sadly passed away at age 17
Conor Foley who sadly passed away at age 17

“We flew in drugs from Austria, we begged for drug companies to allow Conor the best fighting chance. He pioneered a lot of treatments but there is no guaranteed cure for Neuroblastoma.”

On July 3 2015, Conor passed away at the age of 17 after battling cancer three times.

“We went to the ends of the world in every country for a cure or a special tablet for Conor but there was nothing and believe me there is still nothing 16 months on. There has been no official trial to prove conclusively that any drug prevents relapse for Neuroblastoma, therefore the idea of people scaremongering and frightening vulnerable parents of these kids to have to raise €300k to €500k for treatment in the US is absolute sickening.

“Money should be going to research so we can find a cure and save our kids. Crumlin in Dublin is a centre of excellence and has worldwide consultants,” said John.

John said he understands that parents would do “absolutely anything” to help save their child.

“St. John’s cancer ward is a highly stressful environment. We need to raise the hundreds of thousands of euro into research for Neuroblastoma rather than clinical trials.”

Margaret said that no family should be told “there’s no more that we can do for your child, but if you raise €300k you could try save your child in the US”.

“Recently we celebrated Conor’s 18th birthday, but not in the normal way. All Conor’s family and friends were there. The only person missing was Conor.

“We love and miss Conor every day. The house is so quiet especially on Saturday and Sunday mornings when Conor would be up at 7:30am, watching his cartoons and having the TV blaring. Our home was always full of noise.”

The family have set up the The Conor Foley Neuroblastoma Cancer Research Foundation to focus on funding research into options for children with neuroblastoma who suffer a relapse. The charity is registered with the  Irish Charity Regulatory Authority.

“We want for families in the future who have to deal with this cancer to have hope, knowing that there is research being carried out in Ireland to try to find as cure- as Conor did not die in vain,” said John.

You can donate to the Conor Foley Neuroblastoma Cancer Research Foundation by visiting the website at www.conorfoley.ie.

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