Superior Girl Shares her Battle with Rare Disease After Almost Losing her Life

Alejandra Palacios
Updated: February 28, 2020 06:21 PM

In honor of Rare Disease Day Saturday, A Superior girl who was battling for her life after unknowingly having a rare disease shared her story in hopes of sparking change in finding cures for rare diseases.


Carly Webber was enjoying her time volunteering for the Peace Corps in Namibia, Africa in Summer 2018. She was in a remote village volunteering as a English and math teacher.

"It was pretty challenging but I was really enjoying the work that I was doing. I was having a lot of fun," said Webber.

What started as an exciting experience and opportunity quickly spiraled into a life or death situation for her.

"At the end of January, I came down with a stomachache and I initially thought it was from something I ate," said Webber.

She went to the local hospital and doctors thought it was a stomach infection at first. Webber said the stomach pain got worse. Doctors were struggling to figure out what she had. They eventually flew her to a hospital in South Africa to get more answers.

"I didn't know what illness I was battling so it was a lot of just like unknown stuff so it was really scary," said Webber.

It was in South Africa where she started fighting for her life.

"The doctors came and said they were moving me to the ICU because my kidneys weren't working. I went into respiratory failure in the middle of the night so I had to be put on a ventilator," said Webber.

She was placed on a air ambulance and made a 30 hour trip from South Africa to Rochester to get treated.

She was in the ICU at the Mayo Clinic. She was finally diagnosed there with Atypical Hemolytic Uremic Syndrome, a rare disease that can lead to kidney failure if not treated on time. It results from a combination of environmental and genetic factors.

"They think that I ate or drank something that caused me to have a stomach infection," said Webber.

Doctors believe that triggered the disease in her body. Carly was finally released from the hospital in March 2019. She had to get treatment and go through physical therapy.

"The treatment of the drug Soliris has saved my life and kept me alive. It's so expensive and is considered an orphan drug because so few people use it," said Webber.

Carly said a year of treatment is about half a million dollars. She said she is charged $23,000 per bag. Few people can afford the drug or have access to it.

Although her health has improved since then, there's still a chance she could relapse and her kidneys could shut down again.

"My kidney function did come back with treatments. It's at like 45 percent so I'll still need a transplant eventually in the future when it gets lower," said Webber.

That's why Webber wants doctors to find a cure for the disease.

"People are losing their lives from this disease and we have cures for so many diseases that it's just not fair to say we don't need one for this disease because so few people have it," said Webber.

She hopes sharing her story will raise awareness and spark a change for rare diseases. She also wants to be part of that change.

"I just felt really inspired and I wanted to also help people who find themselves in the ICU so I really think I would like to be a nurse and work in the ICU. I'm starting school this summer," said Webber.

Carly is glad she took the steps she needed to get help.

"I think it's really important to advocate for your health because I honestly did question it at first but I'm glad that I trusted my gut and I decided to go in and see a doctor because if I would have waited any longer I may not still be here," said Webber. "I'm very lucky and very blessed that I am still here."


Alejandra Palacios

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