LITTLE Sheffield girl Olivia Tomlinson has a constant hunger – but she is not greedy.
The five-year-old suffers from a rare genetic disorder known as Prader-Willi Syndrome which causes learning difficulties, low muscle tone and a vigorous appetite.
Left to her own devices, she would not be able to stop eating, so she is on a strict 600-calorie diet – about half that of other children her age.
The battle to keep Olivia at a regular weight is tough for parents Karry and Richard, from Grenoside, who have to keep her on the diet to ensure she does not end up obese and develop complications including diabetes.
But the condition has not stopped Olivia, who has a 17-year-old brother, Benjamin, helping to raise awareness of genetic disorders.
She will be taking part in Jeans for Genes Day on Friday, October 5, when everyone is invited to wear their jeans to work or school for a donation to charity Genetic Disorders UK.
Olivia was diagnosed with the condition at a young age.
Former recruitment manager Karry, who now works with adults with learning difficulties, said: “It was horrible and I walked around like a zombie. We were grieving and it was very hard to accept.”
The family are now supported by the Prader-Willi Syndrome Association UK.
Karry said: “We’ve been to the PWSA UK family days and have chatted with parents about our children’s problems and achievements,
“It helps to meet other people who are going through what you are.”
They hope to meet more parents at the PWSA UK international conference for parents and research experts in PWS in July.
Jeans for Genes cash is funding the specialist crèche at the conference.
It will have special sensory equipment for children with PWS and trained nursery staff to look after them.
Karry said: “We’ll take Olivia to the crèche.
“It’s great that we will be able to go as a family. It can be hard coping with what might be in store for us and Olivia in the future, but we need to.
“The conference will help us get updated on the latest research and treatments.
“Olivia is a fighter. She is so caring and a pleasure to spend time with – we enjoy her every day for who she is.
“Our wish for the future is for Olivia to be happy and her life to be what she wants it to be.”