By Emma Innes PUBLISHED: 09:09 EST, 4 October 2013 | UPDATED: 11:51 EST, 4 October 2013 Two brothers with a rare degenerative disease that causes their urine and bones to turn black have been given hope after their father gave up his job to look for a cure. Daniel and Julien Sireau, aged 10 and 12, have black bone disease – also known as Alkaptonuria (AKU) – which will cause them to develop severe early-onset osteoarthritis unless a cure can be found. The genetic disease causes the bones, cartilage, urine and earwax to turn black. It also results in brittle bones and heart disease.
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Daniel and Julien Sireau, 10 and 12, have Black Bone Disease
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Currently they are healthy but they will start to develop debilitating symptoms in early adulthood unless an effective treatment is found
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The disease causes severe, early-onset osteoarthritis as well as bone, urine, earwax and eyeball discolouration - can also cause heart disease
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The symptoms are caused by the rapid build up of toxic acid in the body
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Nick Sireau, the boys' father, has given up his job as CEO of a charity to help organise a clinical trial for a drug he believes will treat the disease
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If the trial is successful, the drug could be licenced and available on the NHS within five years
Black Bone Disease
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