Demi-Leigh Mahon has a condition so rare that doctors named it after and some doctors might have suggested she consider an abortion. Now, Demi-Leigh is 16.
Her lungs and heart failed to develop properly in the womb and, as a result, she is susceptible to infection, meaning a simple cold can be life-threatening – similar to the famous David the Bubble Boy.
The London Daily Mail has this encouraging story:
Baffled doctors had never seen the condition before and warned her parents Kerry and Darren she was unlikely to see her second birthday.
But the teenager – who is often so sapped of energy she needs to sleep for four days just to regain the strength to walk – turned 16 on Tuesday.
As a result of her condition, Demi-Leigh, from Telford, Shropshire, suffers shortness of breath, chronic bronchiectasis (a disease of the lungs) and has a defective heart valve.
Her tiny body is also unable to produce vital B-cells that fight infections and three years ago she underwent a lens transplant to remove cataracts in her eyes.
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Demi-Leigh, who is waiting for a double lung transplant, said: ‘I’m so happy to be 16. I haven’t had the easiest time but with the help of my family and friends I’m determined to get on with life.
‘I love seeing my friends and my birthday was brilliant. I just try to take life one day at a time and deal
with it as it comes.
‘You have down days and up days, but the down days are a few more at the moment as I wait for the lung transplant.