Talon, 11, contracted hepatitis C from his nascency mother's drug addiction. Afterwards 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 grin and comical laugh, Talon Hendrickson-Zimmerman has the kind of carefree spirit that could be hard for anyone to forget.

Withal, life wasn't always every bit piece of cake for the 11-year-erstwhile. Talon began his life every bit i 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 female parent'southward 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 crusade fatal liver damage if untreated.

"Hepatitis C is a virus that causes inflammation of the liver," said Dr. Karen Murray at Seattle Children'due south, who has treated Talon since he was 2 years old. "It can be caused when the blood or other actual fluids of an infected person enter the bloodstream of a not-infected person. In children, the nigh mutual manner that hepatitis C is caused is when a female parent 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 female parent's womb.

Talon was also 12 weeks premature and his delicate torso and poor health identified him as a high-risk babe with failure to thrive. He had to spend 5 weeks in the Neonatal Intensive Care Unit of measurement (NICU) at Seattle Children'southward.

When released from the hospital, Talon was passed from one foster home to some other for the get-go 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 organisation at birth. Lisa Mills took him in at 7 months old and subsequently adopted him into her family unit.

Talon came into Mills' life equally a babe who faced a globe of health challenges before he reached his first birthday.

"We were constantly in and out of the doctor'due south role for diverse health conditions – from issues similar asthma to ear infections," said Mills. "Within the outset 2 years of his life, he had approximately 76 dr. appointments."

Mills was fully committed to caring for Talon. Across her responsibilities equally a foster mom, she felt something deep in her heart for the sugariness and delicate infant boy.

"Shortly before he turned 2 years old, I received a call from Talon's instance worker to see if I was interested in adopting him," said Mills. "I knew I already loved him equally if he were my own biological child, so of grade I said yes."

With Talon being born of Native American descent, Mills had to work with a tribal counsel to exist granted permission to legally prefer 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 axiomatic to them that Talon was in practiced easily and I was ecstatic when they gave me their approval to prefer him."

Infected by the past

In January 2008, Mills wanted to accept the extra cautionary pace in making sure her son was in skilful health given the various conditions he had been facing since nativity. When Talon was ii, he was tested for viruses that may have been passed downward from his nascency mother, such as HIV and hepatitis C. The results showed he was positive for hepatitis C.

Talon was diagnosed with hepatitis C at two years old. He reacted badly to 1 of the only drugs bachelor at that time to treat pediatric patients with the virus.

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

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

"I went through a full range of emotions when I learned he had hepatitis C," said Mills. "I was glad nosotros caught the diagnosis early on, but I was worried about what this meant for his time to come given the stigma effectually the virus."

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

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

"He had a terrible reaction to it," said Mills. "It caused him to accept brain and liver toxicity which severely weakened his immune arrangement."

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

A new treatment for a new life

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

"I was glad we defenseless the diagnosis early on, but I was worried about what this meant for his time to come 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 forbid his virus from spreading to others.

"When he started going to schoolhouse and making friends, we had to tell his teachers and friends' parents virtually his disease," said Mills. "He wasn't just a regular kid in situations where he would accidentally become a cut or skin his knee. There was always that adventure of spreading the virus to others if we weren't careful."

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

"I was agape well-nigh how people would care for him," said Mills. "This virus didn't consequence from something he did to himself, nevertheless there were people who all the same looked at him differently. I just wanted him to be similar any other normal child."

Nearing the finish 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 January. 4, 2016. In just one week, with no signs of side effects, he had made pregnant improvement with his hepatitis C viral load dropping from ane.two one thousand thousand to twenty. By the 2nd calendar week, the hepatitis C virus was completely undetectable in Talon's system.

"We couldn't believe it," said Mills. "It was astonishing to run into the virus numbers subtract so rapidly. I was so grateful to Dr. Murray for providing us with this opportunity."

Murray not just had a role in helping Talon become costless of hepatitis C, she was also 1 of x medical experts in the nation who took function in the clinical trial of Harvoni in teens, which influenced the U.S. Nutrient and Drug Administration's recent blessing 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 heady for the pediatric community," said Murray. "I believe hepatologists who care for 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'due south system ii weeks into the 12-week trial.

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

"Although Talon has wellness bug that need to be monitored, we are and then happy to know he'south no longer encumbered by the virus," said Mills. "He'due south such a friendly kid and people seem to gravitate towards him. It feels adept knowing he's free of the stigma of being a child with hepatitis C."

Talon's grandmother, Dianne Rinesmith, said at that place was a particular moment as they were driving home afterwards learning he was virus-free which she volition never forget.

"I remember Talon said, 'Is this what it feels like to be a normal boy?' Information technology just bankrupt our hearts, even so we were and then 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 menstruum of time, it's wonderful seeing him happily progress," said Murray. "It's rewarding being able to treat patients like Talon to assistance foreclose potentially serious outcomes through clinical trials and so they can have the all-time quality of life possible."

Every bit he enters middle school this fall, Mills will exist watching from the sidelines equally Talon plays his favorite sports like basketball and football – and at present she isn't worried if he accidentally nicks an elbow or scrapes a knee joint.

"Having Talon in my life is such a gift," said Mills. "With all that he'southward had to go through, that 18-carat smile I roughshod in honey with when I brought him domicile for the start time never seems to fade. I couldn't be more than proud to call him my son."

Resources:

  • Rex 5 News HealthLink: "Seattle Children's plays role in hepatitis C drug approval for teens"
  • Curing hepatitis C in kids
  • Seattle Children's Gastroenterology and Hepatology
  • Digestive and Gastrointestinal Conditions: Viral Hepatitis