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I didn't expect it. The room spun as I tried hard to keep control, my mind had a million questions but my mouth had forgotton how to ask them. Then he spoke...thank God for him. He placed his cool hand on mine and said, 'Tell us Doc, what does this mean, in simple terms, please', I swallowed hard as the doctor began to answer.' Well, I have to be direct with you both, there is no cure, this is a metabolic condition, which is very rare..' My eyes stung as I grabbed another tissue. 'There has to be something', his voiced wobbled. 'Nothing...I..I am so sorry..' 'SORRY..' fell out of my mouth, 'Years we've been telling you something was wrong, YEARS', my body shook as I straightened myslef in the plastic chair. ' Let the doc finish honey,let him finish..' he gentley rubbed my back. Clearing his throat, ' Mrs Murphy, I am sorry and I do understand your frustration, you must understand there are only a possible 2000 boys effected world wide with this condition, it is rare...' he raised his eyebrow as I tightened my jaw, now I had to stop the words from spilling out. ' There is a treatment , but it is important you understand this is not a cure, it basically keeps the condition under control and possibly slows down the progression of the condition...it is a fairly new treatment and is only available here, in the last two years , so...' 'What is the treatment and when can we start him on it?' he interrupted, as if reading my mind. 'Well, this is something that will take time, it has to be approved by the EU as the drug your son needs...' ' NATHAN', I roared, 'His name is Nathan and he is not a condition,' grabbing my bag, I stood up, ' I've heard enough, come on...' 'Here Mrs Murphy, take this', he handed me a business card, ' Genetic Councelling ' , I scoffed as I turned and left the room. 'Honey, hun, wait for me', Billy followed me out . 'Lets grab a coffee', he took my hand in his.' We will have to go back and talk more with the doctor, you know that, don't ya babe?'. 'Yes', I began to cry.
Our world had changed.
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