Talon, 11, contracted hepatitis C from his birth mother’s drug addiction. After enrolling into a clinical drug trial offered at Seattle Children’s, Talon is now free of both the virus and social stigma.

Behind his dimpled smile and comical laugh, Talon Hendrickson-Zimmerman has the kind of carefree spirit that could be hard for anyone to forget.

However, life wasn’t always as easy for the 11-year-old. Talon began his life as one of the forgotten children affected by the “opioid epidemic”, leaving him without a mother or home to call his own.

When he was born, Talon suffered the consequences from his birth mother’s drug addiction, which included the contraction of hepatitis C, a contagious virus affecting 23,000 to 46,000 children in the United States that can cause fatal liver damage if untreated.

“Hepatitis C is a virus that causes inflammation of the liver,” said Dr. Karen Murray, division chief of pediatric gastroenterology and hepatology at Seattle Children’s, who has treated Talon since he was 2 years old. “It can be acquired when the blood or other bodily fluids of an infected person enter the bloodstream of a non-infected person. In children, the most common way that hepatitis C is acquired is when a mother passes the virus to the baby during delivery.”

Although his virus diagnosis occurred later in life, doctors initially found that Talon was born with neonatal abstinence syndrome, a group of symptoms that occur after birth in a newborn who was exposed to addictive substances while in the mother’s womb.

Talon was also 12 weeks premature and his frail body and poor health identified him as a high-risk infant with failure to thrive. He had to spend five weeks in the Neonatal Intensive Care Unit (NICU) at Seattle Children’s.

When released from the hospital, Talon was passed from one foster home to another for the first few months of his life. It wasn’t until Lisa Mills, an experienced medical assistant and foster mother to several special needs children over the years, decided to bring home the 7-month-old baby boy.

Finding a place to call home

Talon was placed into the foster system at birth. Lisa Mills took him in at 7 months old and later adopted him into her family.

Talon came into Mills’ life as a baby who faced a world of health challenges before he reached his first birthday.

“We were constantly in and out of the doctor’s office for various health conditions – from issues like asthma to ear infections,” said Mills. “Within the first 2 years of his life, he had approximately 76 doctor appointments.”

Mills was fully committed to caring for Talon. Beyond her responsibilities as a foster mom, she felt something deep in her heart for the sweet and fragile baby boy.

“Shortly before he turned 2 years old, I received a call from Talon’s case worker to see if I was interested in adopting him,” said Mills. “I knew I already loved him as if he were my own biological child, so of course I said yes.”

With Talon being born of Native American descent, Mills had to work with a tribal counsel to be granted permission to legally adopt him.

“The tribal elders knew that Talon could only go to a home that would provide the best care to meet his medical needs,” said Mills. “It was evident to them that Talon was in good hands and I was ecstatic when they gave me their blessing to adopt him.”

Infected by the past

In January 2008, Mills wanted to take the extra cautionary step in making sure her son was in good health given the various conditions he had been facing since birth. When Talon was 2, he was tested for viruses that may have been passed down from his birth mother, such as HIV and hepatitis C. The results showed he was positive for hepatitis C.

Talon was diagnosed with hepatitis C at 2 years old. He reacted badly to one of the only drugs available at that time to treat pediatric patients with the virus.

“The vast majority of both adults and children with hepatitis C show no symptoms of the virus,” said Murray. “As a result of children showing no symptoms, the infection can often go undiagnosed. If left untreated, these children can develop significant inflammation of the liver and some may develop irreversible liver scarring.”

The positive result left Mills in shock and concerned for what was to come.

“I went through a full range of emotions when I learned he had hepatitis C,” said Mills. “I was glad we caught the diagnosis early on, but I was worried about what this meant for his future given the stigma around the virus.”

When Talon turned 3, he began treatment for hepatitis C using one of the only drugs available at that time to treat the virus called pegylated interferon.

Within a few days, Talon began having muscle spasms and had trouble walking.

“He had a terrible reaction to it,” said Mills. “It caused him to have brain and liver toxicity which severely weakened his immune system.”

After consulting with Murray, Mills decided to stop the treatment completely.

A new treatment for a new life

Over the next few years, Mills took Talon for frequent check-ups with Murray to make sure his health was stable while they waited for another treatment option for his hepatitis C.

“I was glad we caught the diagnosis early on, but I was worried about what this meant for his future given the stigma around the virus,” said Mills.

Although he had no symptoms, Mills knew it was her responsibility to make sure she took all the proper precautions to prevent his virus from spreading to others.

“When he started going to school and making friends, we had to tell his teachers and friends’ parents about his disease,” said Mills. “He wasn’t just a regular kid in situations where he would accidentally get a cut or skin his knee. There was always that risk of spreading the virus to others if we weren’t careful.”

As more people knew, the stigma attached to hepatitis C became more apparent to Mills.

“I was afraid about how people would treat him,” said Mills. “This virus didn’t result from something he did to himself, yet there were people who still looked at him differently. I just wanted him to be like any other normal child.”

Nearing the end of 2015, Mills received exciting news from Murray.

“I offered that Talon be enrolled in a clinical trial using the drugs Ledipasvir and Sofosbuvir (Harvoni), which had been highly effective in treating adults with hepatitis C,” said Murray. “While interferon was injectable, this trial used an oral form of treatment that was much easier to administer.”

Talon began the 12-week drug trial on Jan. 4, 2016. In just one week, with no signs of side effects, he had made significant improvement with his hepatitis C viral load dropping from 1.2 million to 20. By the second week, the hepatitis C virus was completely undetectable in Talon’s system.

“We couldn’t believe it,” said Mills. “It was amazing to see the virus numbers decrease so rapidly. I was so grateful to Dr. Murray for providing us with this opportunity.”

Murray not only had a role in helping Talon become free of hepatitis C, she was also 1 of 10 medical experts in the nation who took part in the clinical trial of Harvoni in teens, which influenced the U.S. Food and Drug Administration’s recent approval of the drugs for children ages 12-17.

“With the drugs’ success rate in eliminating the virus in 98 percent of teens, this approval is exciting for the pediatric community,” said Murray. “I believe hepatologists who treat teens are now very pleased to have an effective treatment option to offer.”

Freed from the past, embracing the future

The hepatitis C virus was completely undetectable in Talon’s system 2 weeks into the 12-week trial.

Talon is letting his energetic spirit run wild as he embraces his healthy life.

“Although Talon has health issues that need to be monitored, we are so happy to know he’s no longer burdened by the virus,” said Mills. “He’s such a friendly kid and people seem to gravitate towards him. It feels good knowing he’s free of the stigma of being a child with hepatitis C.”

Talon’s grandmother, Dianne Rinesmith, said there was a particular moment as they were driving home after learning he was virus-free which she will never forget.

“I remember Talon said, ‘Is this what it feels like to be a normal boy?’ It just broke our hearts, yet we were so happy.”

Murray is also pleased that Talon is doing well and living his life to the fullest without the burden of chronic hepatitis C infection.

“Having known Talon for a long period of time, it’s wonderful seeing him happily progress,” said Murray. “It’s rewarding being able to treat patients like Talon to help prevent potentially serious outcomes through clinical trials so they can have the best quality of life possible.”

As he enters middle school this fall, Mills will be watching from the sidelines as Talon plays his favorite sports like basketball and football – and now she isn’t worried if he accidentally nicks an elbow or scrapes a knee.

“Having Talon in my life is such a gift,” said Mills. “With all that he’s had to go through, that genuine smile I fell in love with when I brought him home for the first time never seems to fade. I couldn’t be more proud to call him my son.”

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