My three-year-old son is already on a diet — but nothing will stand in his way

Ruth hopes to show the joy of Prader-Willi syndrome (Picture: Ruth Parkinson) When Ruth Parkinson found her son standing up in his cot, she couldn’t quite believe what she was seeing.

For most parents, a toddler pulling themselves up is a lovely, but expected,milestone.

For Ruth, whose son, Chester, now three-and-a-half, has a rare genetic condition, it was a moment she questioned whether she’d ever see.

‘It took me a while to register that he was standing up in his bed,’ the 37-year-old tells Metro. ‘I was amazed.’

Chester has Prader-Willi syndrome (PWS), which includes symptoms such as weak muscle tone, feeding difficulties and developmental delays.

As children get older, it also causes an insatiable feeling of hunger to develop, with food needing to be carefully managed to prevent dangerous weight gain.

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Ruth and husband, Jonathan, 38, first learnt Chester may have additional needs at a 30-week scan, when it was revealed their baby was measuring very small, with excess amniotic fluid. A further scan, a week before his birth, raised more concerns.

‘I was panicking,’ Ruth says. ‘I was really upset, absolutely terrified.’

Doctors subsequently decided she needed a C-section, and Chester arrived seven weeks early. Ruth remembers him being ‘floppy, like a rag doll’.

He was taken straight to neonatal intensive care, leaving Ruth to recover from her C-section without her newborn son. Husband Jonathan went down to the unit and took photographs so she could see their baby.

‘It was heartbreaking,’ Ruth says. ‘I was on a ward with mums of newborn babies. I could hear all the newborn cries, the mums feeding the babies. I just cried my eyes out.’

When she did see Chester, he was in an incubator receiving breathing support and needed to be tube fed. Doctors were also concerned that he wasn’t moving his arms and legs.

In between spending time with Chester in hospital, Ruth and Jonathan tried to keep life as normal as possible for their daughter Lola, now nine.

‘We must have been on autopilot because it felt like an absolute blur,’ Ruth says.

When Chester was two weeks old, they received the test results confirming he had Prader-Willi syndrome.

‘As the doctor began explaining what the diagnosis could mean for Chester’s future, the reality started to sink in,’ says Ruth.

‘It was like a smack in the face. My first thought was anger. “Why me? Why did this happen to me?”‘

Ruth began to grieve the future she had imagined for her son. She had pictured him and Lola growing up together, going on family holidays and reaching milestones such as getting married and living independently.

‘All that was taken away from me within a split second.’

After Chester came home, more challenges emerged. He continued to be tube-fed, and Ruth gave up working at the hairdressing salon she owned, becoming her son’s full-time carer.

But Ruth says there were joyful moments too, describing Chester as the ‘happiest little boy’ who enjoys singing and dancing, watching Harry Potter, attending his swimming classes, and even going on his first family holiday to Cyprus.

Ruth was also helped to come to terms with her son’s diagnosis, by finding a community on social media, where she connected with other PWS parents, and was offered a different picture of what life with the condition can look like.

‘When you Google Prader-Willi syndrome, it’s awful. It’s all the negative,’ she recalls. ‘When you’ve got that diagnosis, you want to see what they might be doing in three years.’

Now, Chester, aged three, has weekly physiotherapy and uses specialist shoes and a walking frame. He’s also becoming more confident and using more words.

But over time, one of the family’s biggest challenges could be controlling food.

Children with Prader-Willi syndrome develop hyperphagia — an impossible to satisfy feeling of hunger and inability to feel full after eating.

The Prader-Willi Syndrome Association advises giving children small portions, swapping foods for healthier alternatives, meal prepping, and boiling, baking, and microwaving food, rather than frying.

While Chester is not currently showing food-seeking behaviours, Ruth knows this could change. She is already thinking about how the family might need to manage access to food, including potentially locking the kitchen cupboards as he gets older.

For now, Chester is on a diet — he eats 70% of the caloric intake compared to children without PWS, as his low muscle tone and mass means he burns fewer calories.

While this can be hard for Ruth, she knows it’s what’s best for her son. She explains: ‘Sometimes he’ll notice if he’s having different food to his sister and ask: “What’s Lola having?“’

Chester has never had chocolate or sweets, and his version of crisps is vegetable sticks.

Ruth continues: ‘We try to eat similar things. If she’s having chicken nuggets and chips, we’ll give him homemade chicken nuggets with the veggie chips.

‘Our main thing is to eat together as a family, and reassuring Chester that he is getting a meal, but it’s not time yet.’

Ruth still worries about what lies ahead, but she says she often thinks of how her daughter, Lola, then just five, reacted when she learnt about her brother’s condition.

Ruth explains: ‘She said: “It’s okay, Mum, all children are different.”

‘I just thought if everybody could just think like that, then there would be a better place.

‘I often look at where Chester came from, to where he is now.

‘It’s the little moments that mean more than anything.’

Ruth’s friend will be running a marathon for the Prader-Willi Syndrome Association next year. Donate via the Go Fund Me page.

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Ruth is hosting a ball to raise money and awareness for Prader-Willi syndrome, hoping to help fund research and support families. You can sign up here.

Prader-Willi syndrome (PWS) is a rare genetic condition affecting an estimated 2,000 people in the UK. Present from birth, it can cause early feeding difficulties and low muscle tone, delays in development, learning difficulties and disabilities, and problems with emotional regulation.

There is currently no cure. Growth hormone can improve muscle tone and development. No approved UK medicines eliminate the constant feeling of hunger. Individuals rely on high-level support with food access and careful food management, regular exercise and consistent supervision and other support.

The Prader-Willi Syndrome Association UK (PWSA UK) provides information and support for families and professionals.

Do you have a story you’d like to share? Get in touch by emailing MetroLifestyleTeam@metro.co.uk

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