WHEN Stacey Godfrey’s baby daughter Lilia was diagnosed with a rare metabolic condition, the Oxford Children’s Hospital was there to help her and her family cope.

Now Mrs Godfrey is stepping up to help the hospital by taking part in this month’s OX5 Run.

The 29-year-old, from Didcot, said: “Lilia will be two next week but when she was just 10 days old she was diagnosed with Phenylketonuria (PKU), a rare metabolic disorder.

“There is no real treatment available. Her condition is managed by a complex and very restrictive low-protein diet, and we attend regular metabolic clinics at the Oxford Children’s Hospital.

“We also speak to the paediatric dietician by phone every two weeks for advice and to discuss Lilia’s latest blood test results, which we take at home and send in to the hospital for analysis.

“Finding out what was wrong with Lilia was very daunting.

“But we were reassured by the doctor and dietician that if her diet was well managed, she would grow and develop normally.

“As well as lots of initial reassurance, they have given us lots of advice and put us in contact with the support group NSPKU.”

Mrs Godfrey, who is a human resources executive for a drug company, added: “I heard about the OX5 Run in an email letter from Allen Associates, (the event sponsor) who I know through working in HR and recruitment.

“I’ve only run short distances before, mainly on the treadmill in the gym just to keep fit.

“And I haven’t done very much exercise since I had Lilia. But I am really looking forward to taking part in the OX5.

“While I wouldn’t say that Lilia’s PKU is easy to manage, the experience has made us realise how fortunate we are to have a happy, healthy little girl, because of the services provided by the hospital.

“And it’s a nice way to do something constructive as you can sometimes feel like you have no control over the situation.”

In PKU, the body is unable to break down a chemical called phenylalanine which then builds up in the blood and in the brain.

Left untreated, high phenylalanine levels disrupt the normal development of a child’s brain and can cause learning difficulties.

The ninth OX5 Run will take place at Blenheim Palace, Woodstock, on Sunday, March 20, and there is still time to sign up.

Last April, more than 850 runners completed the run and raised £57,000 for the Oxford Children’s Hospital charity.

This year the organisers want 1,000 runners to beat that total.

Runners complete a five-mile course around Blenheim and all sponsorship goes towards buying vital equipment for the hospital.

Mrs Godfrey’s husband Kevin, 34, who is a sales executive for a bathroom company, will be taking Lilia to watch her mum run the course.

The family hopes to raise at least £200 in sponsorship.

Lilia will continue to have regular monitoring and blood tests at the hospital throughout her childhood.

And the hospital will also help her to manage her own diet as she gets older.

Mrs Godfrey said: “The hospital helps thousands of children and their parents, and we are fortunate to have it quite close to home.

“I’ve never run this distance before so it’s a real challenge.

“But I know it’s more than worth the time and effort of training, especially each time I get a new donation that I know is going to support a really excellent cause.”

  • We would like to hear from other people planning to take part in the run. Call our newsdesk on 01865 425444.