A SCHOOLGIRL who suffers from an extremely rare form of cancer has flown to Florida for life-saving surgery.
Niamh Yates, from Tranent in East Lothian, was diagnosed with undifferentiated sarcoma, believed to affect just four people a year in the UK, in January after struggling with her mobility.
The 12-year-old will begin revolutionary Proton Beam Therapy (PBT), which is not yet available in this country, on Monday after the NHS agreed to pay for the £120,000 treatment.
Friends and fundraisers also rallied round to raise an extra £20,000 to meet the family’s living costs in Jacksonville, where they will be based for two months.
Niamh – who has spent 81 days in hospital fighting the illness and undergone six cycles of chemotherapy – jetted off with parents Julie and Paul and younger brother Conor.
Julie said: “Niamh’s tumour is so rare that it doesn’t have a name, it’s just ‘undifferentiated’.
“We have more chance of winning the lottery jackpot and Niamh asked why we couldn’t have just won the lottery instead of her getting cancer.”
After an MRI scan revealed the cause of her problems, the brave schoolgirl underwent emergency surgery the same day to remove part of the tumour.
Doctors said Niamh could have been left paralysed in her lower body because of pressure on the nerves in her spine.
The pioneering PBT treatment is much more precise than conventional radiotherapy treatment, as the tumour cells are targeted using a particle beam, which allows for higher doses to be administered with fewer side effects to surrounding tissue.
The NHS plans to open specialist centres to carry out the treatment in London and Manchester by 2017.
Julie hopes the money raised to help with living costs can pay for once-in-a-lifetime experiences for Niamh, with trips to Disneyland and swimming with dolphins earmarked.
She said: “We wanted to try and make it a memorable trip for us all as a family after the six months we’ve had and to make it as comfortable as possible for Niamh with a few treats thrown in.”
A blog – www.allabout niamh.co.uk – written by Julie has detailed her daughter’s experiences, and she plans to set up a charity to pay for other cancer victims to undergo the life-saving treatment when the family returns home in September.
“We want to start our own charity which will help assist other families dealing with childhood cancers and also for those who have to go abroad for treatment as we did.
“The reaction to our fundraising appeal has been overwhelming, I can’t thank everyone enough. The fund hit its target but fundraising is continuing so any donations are still gratefully received.”
Undifferentiated sarcoma explained
UNDIFFERENTIATED sarcoma is a very rare childhood cancer that begins in body tissue.
Symptoms can vary, but often there is pain or swelling in the area affected. When the tumour grows large enough, it may compress organs and stop them from working as well as they should. Treatment generally consists of a combination of surgery, chemotherapy and radiation, depending on the location of the tumour.
Niamh’s cancer affects her spine. She underwent a seven-hour emergency operation the same day she was diagnosed.
She has had ongoing physiotherapy to overcome mobility issues, and faced six cycles of chemotherapy.