Tuesday, July 03, 2012

Girl, 5, who can't eat chocolate because it would poison her hoping double organ transplant

cute and beautiful baby
Lola (pictured with mother Natalie, left) can't cope with a variety of foods including chocolate. Her older sister Nicole (who she is pictured with, right) had the same issue until she had a double organ transplant

The parents of a little girl who can't eat chocolate are hoping a double organ transplant will change her life.

Lola Raine suffers from a rare kidney and liver disease which means just a sliver of the sweet stuff would cause her potassium levels to rise, poisoning her body and leaving her in a critical condition.

Her sister Nicole, aged ten, was born with the same illness and is now healthy and well after a kidney and liver transplant. Now Lola is in line for the same operation.

Mother-of-five Natalie, of Old Hill, West Midlands, said: 'Because Lola's kidneys cannot remove waste properly, things like potassium would build up in the blood and damage the body.

'It means she can't eat a variety of food, including chocolate, cereals, and crisps.

'She's basically on a diet of sausages and toast until she has her transplant as that's the safest food for her to eat.

'Nicole was the same when it came to chocolate but she could have cereals and crisps because her condition wasn't as bad as Lola's.

'I have to be really careful what I bring into the house because if Lola sees those things she wants them.'

Full-time mother Natalie, 35, and her husband Tim, 46, who works for British Gas, discovered Nicole had Autosomal Recessive Polycystic Kidney Disease - ARPKD - two weeks after she was born.

They were told she would need a combined liver and kidney transplant at Birmingham Children's Hospital - the only place in the UK able to carry out such transplants.

Finally, three years ago, Nicole underwent the operation which changed her life. The couple were told there was a one-in-four chance they would have other children who suffered from the condition.

When Taylor, aged eight, and six-year-old Molly were born they were given the all clear. But when Natalie fell pregnant with her fourth child Lola, she instantly knew something wasn't right. And soon into the pregnancy it was picked up that she too was suffering from ARPKD.

Natalie added: 'This time we were more prepared for Lola's illness. We had learned so much from Nicole's experiences, we knew what to expect. As a result, Lola spent a lot less time in hospital than Nicole.'

Lola is now on the waiting list for a kidney and liver transplant while being closely monitored at ARPKD causes cysts to appear in the tubes that produce and transport urine (kidney) and bile (liver). This leads to scarring, and eventually the healthy tissue of the affected organs will be destroyed and can lead to kidney and liver failure.

Only a child who receives two mutated copies of the PKHD1 gene - one from each parent - will get the disease.

Natalie, whose fifth child Lacey, aged two, was born healthy, added: 'It can be very isolating and scary when your child is first diagnosed. It was helpful to get information from doctors, which is why information days are so important.'

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