“The health visitor stressed the importance of ‘tummy time’ to help Tom lift his head, but he couldn’t do it. He just screamed,” mum Rebecca remembers. “He was slow to reach milestones like crawling and walking, too.”
When Tom started school, Rebecca insisted on a referral to a paediatrician who explained that several conditions might be causing Tom’s problems, including mild cerebral palsy and dyspraxia. He asked to do a blood test ‘to rule out a couple of rare conditions’ but phoned at 9.00am the next day with devastating news: Tom had Duchenne muscular dystrophy.
It was such a shock. It seemed so improbable that my gorgeous son would eventually become locked in a body he could not move and die. Even now, three years on, you feel your heart crack and smash.”
