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Question:
We are looking for some advise to cure the boy in Russian clinic. Thanks We have been searching the Titanium Rib Project web site and we're e-mailing you to ask for your help or advice. Our son (and grandson) Harris Clark is 4 years old (date of birth 15th September, 1997) and he was diagnosed with Kyphosis Congenital Scoliosis since the age of 11 months, when he was placed in the care of a wonderful surgeon in Edinburgh, Scotland. His condition was first noticed in x-rays following a dose of pneumonia at approx. 6 months - the x-rays showed the initial curvature of his spine and further investigations were carried out after this. To date he has had 3 bone grafts, 2 by donor and the last one using sections of his own ribs (March 2001), to strengthen his spine. Harris has reduced lung capacity due to the deviation of his spine and he has suffered further bouts of pneumonia and repeated chest infections. His surgeon feels that due to his poor lung capacity, Harris might not withstand further surgeries and he is very reluctant to operate again. Having seen the BBC Television programme "Tomorrow's World" on the Titanium Rib Project, we asked the advice of the surgeon, but he felt that this procedure was inappropriate for Harris. We are devastated to find out that his prognosis is as poor as his surgeon has told us, and we want to investigate any other possible avenues for Harris. Can you suggest who we could contact, what we can do etc. to find out about any other related projects or investigations which might improve the chances for his future?
Answer:
We're very sorry to hear of this difficult case and our sympathies go out to the boy and his parents. We regret than none of has expertise in this type of case: we would normally refer such cases to one of the specialist Children's Hospitals in the UK, but this appears to already have been done. Sorry, we cannot offer any new information or advice. Best regards
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