Apex baby finishes chemotherapy treatments for rare disease

APEX, N.C. (WTVD) -- Following Emmy Hiller's brain surgery at just 10 months old, her parents entered the recovery room expecting a horrific scene. To their surprise, they instead watched their daughter clap and smile in spite of the operation.

At just 2 weeks old, Emmy was diagnosed with infantile myofibromatosis, an extremely rare and unpredictable disease causing the growth of a tumor or tumors in the body. According to her mother Alyssa Hiller, Emmy had hundreds of tumors, including in her brain and lungs.

"No one wants anything to be wrong with their baby, especially a newborn baby," Hiller said. "So it was pretty devastating."

Despite her condition, Hiller said her now 1-year-old daughter continues to meet each developmental milestone and never stops smiling.

"Truly, she's truly the happiest baby," Hiller said. "She smiles all the time."

After a scan on Friday, doctors confirmed Emmy has no new tumors, with those that remain regressing. Because of her positive progress, she can finally stop chemotherapy, having undergone treatments since she was just 3 weeks old.

Hiller said they remain cautiously optimistic about her daughter's condition.

"We've had a lot of setbacks throughout the process and every time we feel like we have a steady path forward, we're thrown a curve ball," Hiller said. "It's been a roller coaster, so we are very excited. But we're always a little bit cautious with that excitement."

In addition to enduring 12 months of chemotherapy, Emmy has also dealt with surgeries, blood transfusions and emergency room visits; going through more in her first year than most people do in their entire lives.

According to Hiller, her family remains grateful for UNC REX Hospital and the dedicated doctors and nurses who promptly identified her condition and proactively treated her.

"I think we are extremely thankful to be in this area and be able to be treated at UNC," Hiller said. "The nurses and doctors literally caught her disease about 10 minutes after she was born when they knew something was off. And time was of the essence with this disease and getting her treated. So we're really thankful to be in an area with such incredible experts treating her.

Her father, Dan Hiller, said neighbors and community members also provided them with lots of support and assistance during their time of need.

Alyssa Hiller said their family also received support from other parents of children with rare diseases. One mother's words stood out to her, reminding her that her grief would become her superpower.

"Being able to connect with other people who unfortunately have been in this position has been absolutely invaluable," Alyssa Hiller said. "And no parent wants to be here, but I'm looking forward to the opportunity to kind of help someone in the way that these moms and parents have helped me get through this year."

In the face of all the hardships the Hiller family has encountered during the past year, Dan Hiller said the family has done their best to enjoy their time and daughter's first year.

"It seems strange to think about enjoying any part of the last year, but it's also the first year of life and something that I think we would regret looking back if we were constantly, worried or, or angry or sad," Dan Hiller said. "And so we've definitely tried to make a conscious effort to have fun and enjoy ourselves and enjoy her along the way in spite of the challenges that we faced."
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