A LITTLE girl born with a rare genetic disorder is thriving thanks to the support of specialists at Sheffield’s Children’s Hospital. Sarah Dunn found out more about how a specialist diet ensures she grows and develops normally.
LEFT undiagnosed and unmanaged, the condition that Jasmine Green lives with could lead to her developing severe learning difficulties.
Thankfully the disorder - called phenylketonuria or PKU - is routinely tested through a heel prick test carried out on new-born babies.
Jasmine, from Frecheville, became one of the 60 babies a year diagnosed with the condition when she was screened aged just five days.
Now, thanks to the expert advice of dieticians, doctors and specialist nurses at the Children’s Hospital who help her to manage her diet, Jasmine, now aged five, is fit, well and enjoying life to the full.
Mum Alison said: “We are very lucky to have such expertise on our doorstep.
“Thanks to the support of the specialist nurses and dieticians and docs, we’re able to manage Jasmine’s condition.
“We make sure it doesn’t take over our lives, we’re just a normal, happy family.”
Youngsters with the metabolic genetic disorder must follow a low protein diet to avoid problems with brain development, which in turn can lead to learning difficulties.
As part of her routine, Jasmine has three drinks a day, which are designed to ensure she has a form of protein that is safe and will ensure she grows and develops normally.
Otherwise, Jasmine has to avoid eating all but the tiniest amount of protein, usually just five grams a day. It means that obvious sources, such as meat, need to be avoided, along with things like bread and pasta which also contain protein, so in their usual form they are also ruled out.
But to overcome these issues Jasmine has food on prescription - receiving items like bread, pasta, sausages and burgers which are all protein-free.
“The food tastes really nice – and if Jasmine leaves some of it then her dad Lee, soon tucks in!” Alison, aged 40, said.
“Fortunately. Jasmine also loves vegetables, so she has a very healthy diet.”
The family has worked closely with the dieticians, doctors and specialist nurses at the Children’s Hospital to steer their daughter to good health.
And over the years the Greens have developed a close bond with the team, who stepped in as soon as Jasmine was diagnosed and have remained a constant source of advice and support. Alison said: “We had never heard of PKU, so it did come as a shock.
“But we were given the information we needed so we understood about the condition. The hospital has been with us every step of the way. We’ve received advice on how to deal with each stage – such as when Jasmine was a baby, then weaning and moving onto solid food.
“The approach has been helpful as we’ve been able to take things at each stage. I also know if there’s anything I need, I can ring up and get the advice we need.”
Alison, who is also mum to Daisy - aged 12-months and who is free of PKU - said this practical approach had given the family confidence to do all the usual things in life – like go to parties and enjoy holidays abroad.
“We take the view that it’s just food and we’ll just manage,” she said. “It also helps that Jasmine is very bright and clued up, so she knows what she can eat when she goes to birthday parties and what she needs to avoid.
“The service at the hospital is fantastic – we cannot praise it highly enough.”
Sharan Lowry, dietetic manager at The Children’s Hospital, said it was wonderful to watch children like Jasmine grow up into healthy and happy youngsters. “It is very rewarding to see children we have known from birth, such as Jasmine, thriving and developing over the years.”