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How Looking for a Liver Transplant Made This 9-Year-Old a YouTube Star

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Courtesy Schoenborn Family

Having a child in need of a transplant is a terrifying experience. But when Jillian Schoenborn learned her then-8-year-old daughter Hadley was going to be put on the list for a new liver in June, she was ecstatic.

“I always thought it would be devastating because we hate being in the hospital,” the Columbus, Georgia-based mother of four says in the latest issue of PEOPLE. “But I told my husband, ‘I’m so happy! She’s finally going to have a chance at a normal childhood.’ ”

At just 2 months old, daughter Hadley was diagnosed with biliary atresia – a condition that causes inflammation in the body’s bile ducts and damages the liver – and since then she’s spent her life in and out of hospitals.

“She’s been a tough cookie” since the diagnosis, adds Jillian. “[But] it’s been a struggle.”

Jillian and her husband Daniel, a gastroenterologist, both 37, had hoped to make their daughter’s transplant a bit easier by letting her research the process online. But they were shocked when they were unable to find any videos of other kids who had documented their liver transplant journeys.

“Hadley really wanted to be able to see that someone had gone through it and was fine, so I said to her, ‘Well, do you want to make your own? Then the next person will have something,’ ” Jillian says. “She was like, ‘Yeah, Mama, let’s do it.’ ”

The result was the YouTube channel Transplant Tales from an 8 Year Old, where Hadley, now 9, and her mom have posted more than 25 clips.

Now, Hadley – who received a new liver in September – is a touchstone and inspiration for other young patients, and FaceTiming with her new friends to share stories.

“I just wanted other people who were having transplants to see that it’s not that scary,” she tells PEOPLE. “But I’m glad I’ve made friends, too!”

For more on Hadley Schoenborn’s surprising online fame, pick up the latest issue of PEOPLE magazine, on newsstands now