Liversedge family urge government to make cancer treatment available on NHS


The mother of a five-year-old girl with an aggressive cancer has called on the government to secure life-saving treatment in the UK.

Beau from Liversidge, was diagnosed with stage four neuroblastoma - a rare childhood form of cancer - in December 2020.

Since then the family have raised more than £300,000 to send Beau to America for a specialist clinical trial in the US.

But now they want to see those same trials offered closer to home.

Beau's mother, Shirley Hepworth, said: "It is already horrific having a child in this position and then to be told that it has such a high rate of relapse and that the only way is to take her somewhere foreign far away, and have to raise an awful lot of money to do it.

"We are quite lucky and whatever it was that put us in a position where we are able to raise that money, but not everyone can raise that sort of money."

Shirley and Beau want to see specialist clinical trials for neuroblastoma offered in the UK.

On Monday 27 June, Beau and her mother travelled from West Yorkshire to Westminster to make potentially life-changing childhood cancer treatments available on the NHS.

The family's local MP, Kim Leadbeater, said Shirley had done an amazing job raising so much money to send Beau to America, but added that a UK-led trial would save other families from that burden.

She added: "I look forward to discussing what needs to be done to bring this about as soon as possible.”

Neuroblastoma affects around one hundred children in the UK each year.

Neuroblastoma affects around one hundred children in the UK each year.

Gail Jackson from Charity Solving Kids Cancer spoke to MPs about the difficulties the rare disease can bring.

She said: "Chemotherapy regimes, which even from an adults perspectives are very strong and toxic, can lead to very difficult and challenging side effects for children.

"In addition to that, families are then forced to raise funds to access treatment which may prevent the relapse of this cancer coming back. That places an additional burden on families."

Beau plans to join clinical trials in America when she is in relapse. But her family hope their campaigning will ease some of the burden for others in future.


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