Fund overseas Treatment not available in UK
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My grandson was born with a rare tumour on his heart. He is currently 5 months old. It is so rare that no surgeon in UK has the experience to remove the tumour. All they offer is a heart transplant which does not guarantee longevity. Boston Children's Hospital USA does have the experience and success rate where they have removed the tumour and the result being no need for long term medication. The patient going onto lead a normal life. It is not our fault that the surgery is not possible in UK but we have to fund it. If it were available in UK it would be carried out under the NHS . There are currently two other children in UK with the same condition and also needing to go to Boston for surgery at their own expense. Although rare there will undoubtedly be more babies born in the future with this condition.
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