STRENGTH IN NUMBERS

Strength in Numbers dedicated to my late mother Kay

The illness so rare it has no name. Eight-year-old Dominic Blower is one of 6,000 children born every year with an undiagnosed genetic condition, classified as SWAN

Dominic Blower has inquisitive brown eyes, an unruly mop of dark curls and a mega-watt smile. Watching him as he scolds his puppy for chasing the family’s chickens around their St Albans garden, it is heartbreaking to hear that by the age of five he had already spent more than half of his short life in hospital.

He had endured several major operations. Muscle biopsies had left long snaking scars on his legs. Severe bouts of pneumonia had left his lungs as fragile as tissue paper. During one episode, he developed acute respiratory distress syndrome – which stiffens the lungs, preventing them from working. He spent three days on a ventilator, and his mother, Renata, was told to prepare for the worst. ‘‘I had to call in my other children – Elliot, then six, and Lilia, four – so they could say goodbye,’’ says Renata, 39, a former NHS liaison officer. ‘‘How on earth do you explain that to a small child?’’  Her partner Roger Clifton, a company secretary, 50, recalls her ‘‘screaming’’ when she was told Dominic’s chances of surviving were very slim. What is the affliction that has blighted eight-year-old Dominic’s life and the lives of his parents and siblings? We simply don’t know.

Click on the link to read more

http://www.telegraph.co.uk/news/health/11563193/The-illness-so-rare-it-has-no-name.html

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Renata Blower with her three children – Eliot, 12, Dominic 8 and Lilia 10 . Dominic has SWAN – an undiagnosed children’s syndrome. For more information, visit SWAN UK

Filed under: NHS, Uncategorized, ,

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