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 undiagnosed liver condition.
As a result, she scratches her skin constantly, leaving her with scars from her feet to her face.
Her parents are desperately looking for ways to soothe Clara’s agony. But, what’s more, doctors say Clara’s liver could fail in the future and that she may need a transplant.
Clara Peterson, six (pictured), from Green Acres, Washington, was first diagnosed with progressive familial intrahepatic cholestasis as an infant
The rare disease is caused by a gene mutation that codes for a protein to excrete bile salts. However, the bile salts instead build up in liver cells and go back into the bloodstream. Pictured, left and right: Clara with her mom Natalie
Before Clara was a year old, she was diagnosed with a rare, genetic condition known as progressive familial intrahepatic cholestasis (PFIC), according to a GoFundMe page.
Specially, doctors said she had 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.
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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.
Natalie told DailyMail.com that Clara had a basic genetic test done to define what type of PFIC she had, and her genetic markers came back negative.
This means ‘she has all the symptoms, but none of her medical tests come back with the expected results’.
Therefore, doctors are not certain why her liver isn’t functioning properly or she has such intense itching.
Clara has severe itching and her constant scratching has left her with scars on her feet, ankles (pictured), hands and nose
Cara had a basic genetic test done to define what type of PFIC she had, and her genetic markers came back negative. Pictured: Clara with Chester the dog
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, and her liver begins to fail, Clara may 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.
Doctors are trying new, experimental drugs, and – if they don’t work – Clara may need a liver transplant before she’s an adult. Pictured: Clara with her mom Natalie
In the meantime, the family has bought a therapy goldendoodle named Chester, who puts pressure on Clara’s body to help calm her down and not scratch (pictured)
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.