Katie Swain, whose daughter Matilda was referred from UCLH to Jacksonville, Florida, for PBT said it would have made a big difference if she had been treated in London.

“It would take the pressure off parents and enable children to carry on with a normal school life and have the support of their friends and family close by,” said Ms Swain.

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Matilda Penfold-Swain and her sister Georgia

Matilda, 5, went to America to be treated for retinoblastoma – cancer of the eye. Ms Swain was full of praise for PBT. She said: “The radiation would have gone into her brain if she had been treated with conventional radiotherapy. It might have affected her IQ or caused additional tumours. The more you can minimise the exposure to radiation the lower the risk of there being further problems.”

Two-year-old Lennie Anderton flew to America for Proton Beam Therapy in July 2012. At just 10 months old he had been left blind from cancer of the skull, but together with his parents Ed and Katherine and sister Zoe, five, he travelled to the University of Florida Proton Therapy Institute, Jacksonville, for the life-saving treatment.

 

His Father Ed said: “It would be wonderful to see families who are in a similar situation to us being able to get the same treatment here and not having to leave the country for three months like we did.”

He said his family was ‘sucked into a different world’ after taking Lennie to A&E during a family holiday in February 2012. Lennie was rushed to Great Ormond Street Hospital where he was diagnosed with Ewing’s sarcoma of the skull. “It felt like falling off a cliff,” said Ed.

“It was devastating news and we then had to go to America and leave our support network and take time off work. We made a  success of Florida – it wasn’t a bad experience – but being at home would have been ideal.”

Ed from Tottenham in North London, said that following the treatment, Lennie is making good progress and is ‘jolly and full of laughter’ and happily back at home.