A Wisconsin boy with a rare disease that causes his skin to blister at the slightest touch has now been diagnosed with cancer.
Charlie Knuth, 13, from Darboy, was adopted by his parents after he was abandoned at the hospital as a baby.
He suffers from epidermolysis bullosa (EB), a rare genetic tissue disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections.
Charlie has lived most of his life wrapped in bandages and has to take special baths on certain days to treat his sores and keep them from getting infected.
But the teenager is now facing a new battle after being diagnosed earlier this year with lymphoma, a cancer of the immune system.
Charlie Knuth, 13, from Darboy, Wisconsin, was born with a rare skin disorder. Pictured: Charlie, right, with his father, Kevin
The disorder, known as epidermolysis bullosa, causes the skin to blister and burst at the slightest touch and leaves raw sores. Pictured: Charlie in the hospital)
Charlie’s mother, Trisha, told DailyMail.com that her son was abandoned at the hospital by his birth parents.
She and her husband, Kevin, foster children with medical needs and they got a call two weeks before their foster care license was about to expire about Charlie.
‘Doctors told me he would die in the first year of life and my job was to keep him as comfortable as possible,’ she said.
‘Instead of declining in health at our home, he thrived. His [biological] parents’ rights were terminated and we began the process of adoption. The process to adopt took about a year.’
Sufferers of EB are missing type VII collagen, a protein that allows the top layer of skin to bind with the bottom layers.
The slightest movement can causes the skin to immediately and continuously fall off.
The disorder is very rare, and is estimated to occur in 20 newborns per one million live births in the US, according to Stanford Children’s Hospital.
About 87 percent of children born with EB die during their first year of life.
EPIDERMOLYSIS BULLOSA: EXPLAINED
Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.
The skin is missing type VII collagen – a protein that usually binds the top layer of skin to the bottom layers.
Any trauma or friction to the skin can cause painful blisters.
In most cases, the symptoms of EB are obvious from birth.
It is caused by faulty genes inherited from one or both parents.
There are many cases when both parents are carriers of the faulty gene without realizing it.
EB is rare – just one in every 50,000 children in the US has it.
There is no cure for EB so the treatment aims at preventing blisters becoming infected.
There is no cure for EB so treatment aims at preventing blisters from becoming infected.
Trisha says that her son is ‘typically a bloody mess in the morning’ simply from sleeping during the night as his bandages shift out of place.
Charlie takes at least 20 medications per day and then his parents spend about two hours disinfecting the room to change his bandages.
On bath days, ‘he will get in a specialty bathtub. The water’s PH is adjusted, pool salt is added to create saline which helps reduce the sting,’ Trisha said.
‘A small amount of bleach is added to bath to reduce bacteria. Charlie soaks in tub about 30 minutes. When he gets out, we lance any blisters and cover his entire body with new bandages.’
Charlie has also undergone two experimental bone marrow transplants and another surgery in 2017 to restore the use of his hands, which were degenerating due to his condition.
Trisha said the Charlie’s hemaglobin levels – levels of a protein found in red cells – had been crashing over the past year, making his doctors suspicious.
‘[His doctor] decided to do a CT scan because he had a hunch this was something besides EB,’ she said.
‘The scan revealed enlarged lymph nodes in his neck and armpits. A needle biopsy of his armpit was done in the [operating room] the next day as well as labs.’
Charlie was diagnosed with lymphoma.
Charlie (left and right) was abandoned at a hospital before being adopted by his current parents. Earlier this month, he was diagnosed with lymphoma, a cancer of immune system cells
His parents said they are traveling to Minnesota to figure out what stage his cancer is at and what treatment he will undergo. Pictured: Charlie, right, with his mother, Trisha
Lymphoma is cancer that begins in the lymphocytes, which are immune system cells that fight infection.
Signs and symptoms include swelling of the lymph nodes, fever, fatigue, shortness of breath and sudden weight loss.
Treatment varies and can include chemotherapy, radiation therapy and immunotherapy.
It is estimated that 82,310 people will be diagnosed with lymphoma in 2019 and that 20,970 will die, according to the American Cancer Society.
Charlie’s mother added the family will be traveling to Minnesota so his cancer can get staged and they can assess treatment options.
She said she wants to raise awareness of EB and wants people to show kindness despite someone looking different than them.
‘I hope people can show empathy and kindness to people who look different and have limited abilities,’ she said.
‘My child only wants to be treated like a normal 13-year=old boy. He dreams of being a stay-at-home dad some day.’