Agony of girl, 6, with constant full-body itch caused by rare liver disease that leaves her screaming and scratching through the night

February 21, 2019  19:43

Imagine having a constant itch over your entire body that no amount of scratching will ever satisfy.

That is a reality for six-year-old Clara Peterson, due to an extremely rare liver disease.  

Clara, from Green Acres, Washington, was diagnosed when she was an infant with a condition that causes bile salts to build up in her liver cells.

As a result, she scratches her skin constantly, leaving her with scars from her feet to her face.

For those symptoms alone, her parents desperately want a liver transplant to soothe Clara's agony. But, what's more, doctors say Clara's liver is failing and without a transplant, she won't live to see adulthood.   

Before Clara was a year old, she was diagnosed with a rare, genetic condition known as progressive familial intrahepatic cholestasis (PFIC).

She has type 2, which is a mutation in the gene that codes for a protein called the bile salt export dump.

The protein moves bile salts, which break down fats and remove toxins, out of the body.

However, the gene mutation causes the bile salts to instead build up in liver cells.

'She has extreme itching because the impurities that are supposed to be put out by her liver and her gall bladder go right back into her bloodstream,' Clara's mother, Natalie, told KXLY.

PFIC affects between one in 50,000 to 100,000 people worldwide, according to the National Institutes of Health.

Those with PFIC type 2 are often in need of a liver transplant before they reach adulthood and are also at risk of developing liver cancer.    

Clara has been on medication since she was 17 months old to relieve the itching, according to a GoFundMe page.  

Natalie says her daughter has scratching fits day and night, the latter being extremely difficult because Clara will scratch in her sleep 

'She wakes up screaming in the middle of the night. She scratches her ears, her face,' Natalie said.

The constant scratching has resulted in scars all over the little girl's body including her feet, her ankles, her hands and her nose.

However, the medications she takes are not working as effectively as they once were.

The Petersons are traveling a few times a year to Seattle so doctors can try experimental drugs.

If all options are exhausted, Clara will be placed on the liver transplant list. 

In the meantime, the family has been looking for other options to help Clara not scratch as much.

One option they found is Dogology Northwest, a Washington-based company that trains dogs with behavioral problems and provides therapy dogs.

The company sent over a goldendoodle named Chester, who puts pressure on Clara's body to help calm her down and not scratch. 

'It's night and day. She's a completely different child,' Natalie told KXLY. 'He will put his head on her chest, her arms, her legs, wherever, and she'll calm down.' 

Last month, Natalie shared a photo on Facebook of the dog at Clara's feet as she ddi schoolwork.

'[Five] minutes ago she was freaking out and scratching her legs/ankles. How she's running her feet on his soft fur, and everyone is happy,' she wrote in a caption.

The family started a GoFundMe campaign to raise the $15,000 needed to buy Chester. 

After raising half the money needed, a non-profit called K9s Healing Hearts pitched in to cover the rest.

Source: dailymail.co.u

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