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SEP–DEC 2022 THE REVIEW | 15 FEATURE “Sometimes I feel like a fraud. Hidden disabilities can be challenging in ways I just hadn’t ever considered.” – Tracey Winstone for Eleanor, when the twins were around eight weeks old, the family were about to be discharged when the doctor said to Tracey “Eleanor’s fine, she can go home, but she [Pippa] needs to stay”. The doctor could tell that she wasn’t breathing properly. And so began “the Pippa puzzle”. Pippa had lots of colds which quickly led to low oxygen levels and respiratory distress, it was discovered that she had narrow nasal passages, and she was diagnosed with asthma at the age of two. Further investigation revealed Pippa had floppy airways and a delayed swallowwhich can cause her to choke. They saw numerous doctors, “but we were still missing pieces of the puzzle”. Things changed when they met paediatrician and rehabilitation specialist Dr Jimmy Chong. Dr Jimmy watched her walk down the hallway and then sat down with Tracey. “He pretty much said ‘so, just to clarify – we’re not here to work out if she has Cerebral Palsy, but to work out what the extent of her CP is’.” Finally, at the age of four, the family had a confirmed diagnosis for Pippa. While they will never know for sure what caused Pippa’s Cerebral Palsy, and when it The couple knew something more was going on when Pippa started crawling - she’d commando crawl, but only using her right side. As a toddler, she was very active, but often fell over. At one stage a doctor told Tracey and Charles, “I don’t think it’s Cerebral Palsy, she’s far too mobile and functional”. Over the years the parents noticed “a marked difference” between Pippa and her peers. “She didn’t grow out of those things people said she would grow out of. The fatigue was obvious – a toddler doesn’t run out of energy and suddenly drop the way Pippa would.” occurred, it is likely to have happened after one of her breathing incidents when she was a fewweeks old - a lack of oxygen causing damage to her brain. For Pippa, a keen footballer, Cerebral Palsy means she sometimes walks differently and sometimes her hands curl into a bit of a claw shape. But a lot of the time she can mask, or hide, these visual signs of Cerebral Palsy quite well. The biggest impact for the youngster is fatigue. A busy week at school and a football game on a Saturday morning can see her spend the next two days, or more, in bed. Above top: Pippa is following in the family footsteps and thrives when she’s on the football field. Above: Pippa loves the outdoors. Opposite top: Pippa, left, with mum Tracey, twin sister Eleanor, dad Charles, and older sister Phoebe. Prior to attending school, Pippa was managing just two days a week at kindy due to exhaustion and fatigue. She now has a 70 per cent attendance rate at school. “She looks ‘normal’, ‘average’,” Tracey says. “Sometimes I feel like a fraud. Hidden disabilities can be challenging in ways I just hadn’t ever considered.”