Emily Hampton was born a healthy, full-term baby in California, weighing 9 lbs. 2 oz. She met all of her milestones on time, if not early for her age.
But at 7 months of age, Emily encountered problems swallowing. Pigmented birthmarks, known as café au lait spots, appeared spontaneously on her body as well as a mass under her tongue.
“I was told the mass was a cyst and no further investigation was necessary,” said Mindi Hampton, Emily’s mom. “But I knew in my gut the cyst was a tumor.” Mindi, a nurse, followed her intuition and pursued numerous medical opinions.
Five months later, Emily was diagnosed with Neurofibromatosis (NF) Type 1, a disorder that causes tumors to grow along nerves anywhere in the body at any time. Although genetically passed in 50 percent of cases, Emily’s NF was not inherited but rather a spontaneous mutation at conception.
An MRI revealed a large tumor in Emily’s left cheek that continued down the left side of her neck, wrapped around her carotid artery, pressed on her trachea and then popped up under her tongue. It also revealed a mass on her brainstem and spots on her optic nerve.
Emily went from being an active newborn to a thin, frail 1-year-old almost immediately. With the tumor obstructing her breathing passage, Mindi and Rob feared for their daughter’s life.
“I wasn’t able to sleep at night because the tumor in Emily’s neck would compress her trachea. She’d wake up gasping for air, and I’d have to reposition her head to keep the tumor off the airway,” said Mindi.
Doctors and specialists in Los Angeles told the Hamptons that there was nothing they could do and to call 911 if Emily had trouble breathing.
But Mindi and Rob were not satisfied with that answer and continued looking for options.
The Hamptons discovered that Riley Hospital for Children and the Wells Center were conducting the only clinical trial in the world for NF Type 1. Mindi immediately contacted Dr. Kent Robertson, who was leading the study with Dr. Clapp using Gleevec, a chemotherapy drug. Mindi was informed that the trial had closed two weeks prior.
Six months passed before the Hamptons received the invitation from Dr. Robertson to join the new trial. Emily entered the trial in May 2008.
“We were nervous, but everyone put us at ease,” said Mindi. “We were blown away by the personal attention and care we received at Riley. It was unlike anything we experienced in Los Angeles. We fell in love with Riley.”
Today, Emily’s tumor has decreased significantly in size. The kindergartner has regained muscle tone and energy.
The Hamptons enthusiastically say their trips from Los Angeles to Indianapolis are worth every mile.
“I don’t know if Emily would be here today without Riley Hospital and the incredible research being conducted,” Mindi says without hesitation. “How could we ever give back for all that has been given to us?”