LITTLE Millie Earnshaw’s kidneys could fail at any moment.
But the Cowlersley girl’s mum and dad are determined to raise money to help find a cure for her rare disease.
Millie, four, has nephrotic syndrome, where large holes in her kidneys mean she suffers agonising bloating for months on end.
Doctors have been unable to treat the potentially fatal disease and her parents have been told her kidneys will fail within five years.
But parents Becky Baker and Steve Earnshaw have refused to admit defeat and are raising money for research into the disease with an event for the Nephrotic Syndrome Trust in Crosland Moor later this month.
Becky, 23, said: “They are struggling for money because very few people have heard of nephrotic syndrome.
“I hope a cure can be found and every penny helps – even if it’s not for Millie.”
Becky and Steve, of Manse Drive, first noticed something was wrong with Millie just a year ago, in October 2008.
Steve said: “Millie woke up one morning and her face was so swollen that we couldn’t see her nose. We thought it was an allergy.”
They rushed their daughter to Huddersfield Royal Infirmary where she was diagnosed with nephrotic syndrome, a condition which effects one in every 5,000 people.
Large holes in the kidneys cause the sufferer to lose protein, causing bloating.
But unlike most patients, Millie did not respond to treatment. Becky said: “The doctors are baffled by Millie.
“They put her on steroids which didn’t work, then she started on the cancer drug cyclophospomide in May.
“That was the only other cure they could possibly give her but it didn’t work either.
“Millie’s kidneys will fail within five years and she won’t be put on the organ transfer list until her kidneys actually fail. It’s a terrible waiting game.”
In the meantime Millie has to cope with the disease.
Steve, who owns a building firm, said: “She gets quite a lot of swelling, sometimes she cries all night from the pain.
“Millie can’t eat bananas because the potassium would poison her and she can’t have high-salt foods either.
“We have to read the label of all the food we buy – I never realised how much rubbish goes into food.
“It’s hard to give Millie a normal life.”
Becky, who had to give up her job as a carer to look after Millie, said her condition is worse in the winter.
She said: “Millie has no immune system so something like swine flu or chicken pox could kill her. We need to know about every cough or cold.”
But Millie, who goes to pre-school at Cowlersley Primary School, is like any other young child. Becky said: “She’s very chatty and mischievous like any other four-year-old.”
Steve and Becky are organising a fancy dress charity event on October 18 – the first anniversary of the day Millie first became ill.
More than 30 friends and family have already signed up for the fun race around the pubs and clubs of Crosland Moor and Lockwood.
But they had to change their original plans because of Kirklees Council regulations.
Steve said: “We wanted to have a three-legged race but when we applied for an event licence the council said it would be too dangerous, which I think is crackers.
“We’re doing a three-armed race instead. There’ll be a challenge in each pub, like playing darts or pool while tied to someone else’s arm.”
The fundraisers will start at Crosland Moor Working Men’s Club and call at The Craven Heifer, The Railway, The Swan, The Lockwood, The Woolpack, Yorkshire Victoria, The Star Inn, Bar One, The Bridge and Crosland Moor Conservative Club.
The fun day ends at the Foresters Arms with an evening of karaoke, raffles and fundraising games.
Anyone interested in taking part or sponsoring the three-armed race can call Becky on 07723 445197.
For more information about the Nephrotic Syndrome Trust visit www.nstrust.co.uk.