HELP TO SAVE DYING BABY MILLIE

 

The condition, Zellweger Syndrome, stops her brain from working normally and prevents the breakdown of harmful substances in her blood.

Her brain, liver and kidneys are slowly shutting down, she is almost deaf and her vision is so bad she can only see bright lights.

Doctors have warned she might not survive until her first birthday.

But parents, Paul McMenemy and Diane Burt, refuse to give up.

 

They tracked down the world's only expert in the condition - who believes she can help give Millie a few more years of life.

 

Diane, 31, of New Stevenston, Lanarkshire, said: "This is the only hope we have of seeing Millie grow up. When she was diagnosed, we were told there was no cure.

 

"We were going to have to sit back and just watch her die.

 

"I don't know how any parent could do that and we were determined that wouldn't happen.

 

"As there is no treatment, the only thing we could give her to build her strength was pre-digested liquid fat.

 

"It is the only thing you get in the UK for people like Millie. You feel cruel because it smells like a chip shop, but it helps her grow."

 

The breakthrough the couple had been praying for came when a doctor at Yorkhill Hospital told them about a clinical trial being carried out in Spain.

 

Paul and Diane then wrote to the doctor in charge, Barcelona paediatrician and biochemist Dr Manuel a Martinez, for help.

 

Within hours, she got in touch to say she believed she could help Millie.

 

Hairdresser Diane said: "They were the words we had been waiting for and we just jumped up and down with joy.

 

"She is the only person who can offer any sort of hope to Millie and we are just over the moon she is going to help.

 

"She is already treating kids in other parts of the world and some of them are nine or 10 now."

 

The couple, who have five kids between them, have spent the last month raising funds to pay for Millie's trip to Barcelona for her treatment.

 

Sign maker Paul, 33, said Dr Martinez said the younger Millie is when she starts treatment, the better chance of survival she has.

 

The family have organised a sponsored walk in Strathclyde Park tomorrow to raise funds and other donations have already been flooding in.

 

News of Millie's breakthrough treatment has touched locals so much, many have already been fundraising for her.

 

Paul said: "We have been utterly overwhelmed at how kind people have been.

 

"It has been amazing. We have already got £5000 and we have been able to book our trip to Barcelona with Millie."

 

The family will travel to Spain on Monday.

 

Experts will carry out a series of tests on Millie before putting her on a special formula which is unique to the clinic there.

 

Paul said: "We have been told this formula, which contains nutrients from fish oil, is the key to keeping her alive.

 

"Most people are able to make this nutrient themselves until they are four years old but Millie only makes 10 per cent of what she should."

 

The family will have to visit Barcelona twice a year so experts can check on Millie's progress.

 

Each trip will cost around £5000, so the family desperately need to keep raising funds.

 

Doctors knew there was something wrong with Millie shortly after she was born last November.

 

At first they thought she might have Down's Syndrome or cerebral palsy but blood tests ruled them out.

 

Experts in Holland, where some of Millie's tests were sent for analysis, confirmed she had Zellweger Syndrome two months ago.

 

Paul, 33, said: "It was a relief to know what was wrong but it was just heartbreaking when they told us it was terminal. We felt so helpless.

 

"Millie is a right wee charmer, she is always smiling and humming away to herself. When they said she could have just months to live we couldn't take it in.

 

"She is just our bundle of joy and we hope with help from the doctors in Spain to have her around for a lot, lot longer."

 

YOU CAN DONATE TO MILLIE'S FUND AT WWW.WALK4MILLIE.CO.UK

source:  www.dailyrecord.co.uk

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