ST. LOUIS (KMOV.com) - Diffuse Intrinsic Pontine Glioma, or DIPG, is the deadliest form of childhood brain cancer. It’s a rare form of cancer that most people have never heard of but children diagnosed with DIPG have no chance of survival.

"We're losing our kids to this silent monster. This thing, that out of nowhere, says were here and we're here to take your kid," said Leanne Hampton.

Hampton is a friend of Amber Helzer, whose 3-year-old daughter Alaina was recently diagnosed with DIPG. Alaina is being treated at St. Jude’s Hospital in Memphis and will begin radiation treatments August 20.

According to the DIPG Registry, there are approximately 150-300 children diagnosed with DIPG each year, usually before the age of 10. Less than 10 percent of children will survive as long as two years.

"You know when people talk about cancer as an ugly, evil thing, this is really it," said St. Louis Children’s Hospital pediatric oncologist Dr. Josh Rubin

According to Rubin, the tumors develop in an area of the brain stem known as the pons. As the tumor grows, it chokes the nerves that the brain uses to tell the body how to function.

“The speech can change, they have trouble swallowing and they lose motor function in their arms and their legs. They can become unsteady and their facial expressions may change,” said Rubin.

Dawn Biles’ daughter, Adliegh, died of DIPG in December 2018. When doctors gave her the diagnosis, she said she made the decision to forgo treatment and to focus on fun.

“We had to fit 60, 70, 80 years into nine months to a year,” said Biles.

After Adliegh’s death, Biles created the Adliegh is Forever Foundation to raise awareness and support other families. Recently, Missouri Governor Mike Parson signed legislation sponsored by Jefferson County State Representative Becky Ruth, designating September 9 of each year as DIPG Awareness Day. September 9 was Adliegh’s birthday.

The odds are more than 1 in a million that a child will be diagnosed with DIPG, but Alaina was the second child living in St. Clair, Missouri to receive that diagnosis in one year.

Those cases, along with others in the region in the last couple of years have raised the question of whether there’s a cancer cluster in the St. Louis area. According to Rubin, some years the numbers are up and some years they’re down but he said there’s no proof the recent cases are more than a coincidence.

Rubin said Children’s Hospital will soon start clinical trials focusing on treatment of DIPG tumors. He said he hopes researchers are finally on the verge of a breakthrough.

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