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19 January 2012, 17:00 | Updated: 19 January 2012, 18:07
The family and friends of Bailey Sarwa are fundraising to try to pay for medical care abroad not offered in the UK.
12 year old Bailey suffers from a rare form of cancer, neuroblastoma, which affects the nerve cells. He recently suffered a relapse after having nearly seven years in remission.
He's currently undergoing chemotherapy at Great Ormond Street Hospital but isn't able to have an antibody treatment there that is available in Germany and the US, so an appeal has now been launched to try to get him this treatment.
His Mum Becki Jones feels he deserves this treatment, which she thought he would get in February but isn't being offered to relapsed children. When they found this out she said they were 'just gutted, we're gutted anyway that we had to go through all this again.
'This time with Bailey being older it's much harder because he understands much more, but he's got the fight there, we know what we're facing, we know that we've got to be strong.'
Bailey has been in and out of hospital since the age of 4. He told Heart: 'I just hate it, it's like going somewhere for five days and then coming back for two weeks. It feels like it's going on forever and I don't know when I'm going to finish the chemotherapy.'
Great Ormand Street Hospital said that they couldn't comment on individual cases but Dr Penelope Brock, a consultant paediatric oncologist there said: 'There is an urgent need for the clinical and research community to develop new treatments to improve outcomes in these very sick children, and this is something we are working hard on with our colleagues across Europe.
'No clinical trial for any disease is available in every country. Unfortunately this does mean some patients cannot gain access to trials in their home country as there is none taking place that they are able to take part in. This can be extremely distressing for families and explains why some may choose to explore treatment options abroad.'
The family is being back Families Against Neuroblastoma (FAN) through Bmycharity.
You can donate money at www.bmycharity.com/BaileySarwaAppeal