Katie Price is turning to weight loss injections to save her son Harvey’s life, and mum Min Kaur is preparing for the same fight with her daughter.
Harvey, 22, has a rare genetic condition called Prader-Willi syndrome, which means he’s constantly hungry and battling life-threatening obesity. “He’s at risk of a heart attack and because of his condition, he’s not getting any smaller,” the former glamour model told The Sun. “He’s putting on weight. It doesn’t matter what we do.”
Min’s one-year-old Sophia suffers from the same disorder as Harvey, which can cause learning difficulties and behavioural challenges as well as excessive appetite. And while her tot’s eating habits are currently normal, her dietician has told Min she may start to overeat from the age of two.
The expert has even warned the 45-year-old mum she’ll need to put a lock on her fridge. “I’m learning as I go – I feel prepared to start keeping an eye on her weight within the next few years,” said the parent from Newcastle. “I don’t know how long Sophia is going to live – at the moment, I’m trying to be as positive as I can.
“I’ve got an excellent care team and I’m learning as I go – I feel prepared to start keeping an eye on her weight within the next few years. Sophia’s doctors say she’ll live longer if she can maintain a healthy weight – they just can’t say how long.”
As an older mum, Min decided to get Sophia screened for Down syndrome while she was 12 weeks pregnant. Had a screening been available for Prader-Willi syndrome and other genetic disorders, she says she would have undergone them too.
The mum-to-be planned for an induced labour at Newcastle’s Royal Victoria Infirmary in January last year but with the drugs unable to start her contractions, she was taken for a caesarian section and Sophia was born at 2.22am on January 14, weighing 6lbs 3oz.
Min immediately noticed she wasn’t making any noise, was freezing and would fade in and out of consciousness. Sophia was taken to ICU and a week after she was born, a genetic blood test came back positive for Prader-Willi syndrome.
“It was so scary,” said Min. “I kept blaming myself but my care team reassured me I hadn’t done anything to hurt her. I didn’t know anything about Prader-Willi at all – of course, I’m more clued up now. They say she’ll have a shorter life – and won’t have an off-switch for eating.”
The tot spent four weeks in the intensive care unit, before being discharged back home with Min – who has needed to give up work in order to look after her full-time. Sophia, sees a physiotherapist every Thursday to help learn core movements like crawling, isn’t expected to hit her milestones at the same rate as babies without her condition.
And she will need healthy meal plans to prevent obesity. “I’m really going to have to be in control of her food as she grows up,” said Min. “It’s not going to hit her until she’s two years old – as long as she doesn’t get obese, she should be able to live a longer life.
“At the moment, she seems to know when she’s full – she puts her lips together when she doesn’t want to eat any more. She’s also a healthy weight.”
While visiting Sophia daily in the ICU, Min spent all of her £5k savings on travel, food, urgent home repairs and sensory toys for the tot. She hopes to adapt her home to meet Sophia’s needs – but is currently unable to afford the costs after giving up work.
Min and Sophia’s GoFundMe can be found here
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