A 19-year-old who was diagnosed with an incurable brain tumor months before giving birth has died after more than a year of battling to find a cure.
Dana Scatton, of Pennsylvania, was seven months pregnant in December 2017 when a brain scan revealed she had diffuse intrinsic pontine glioma (DIPG).
It is one of the most devastating cancers, which affects 300 children a year, most of whom are under 10 years old. No one has survived with DIPG for longer than 18 months, and it does not respond to any treatment.
Despite some recent efforts to test moonshot treatments for DIPG in clinical trials, researchers have long struggled to find any glimmers of progress – and have therefore struggled to get funding to keep trying.
Dana delivered her daughter, Aries Marie, a month early on January 4, 2018, before starting radiation treatment, and traveling to a clinic in Mexico, which promotes a ‘cure’ for DIPG, though they have not succeeded and doctors accuse the clinic of preying on vulnerable families.
There were moments of hope and progress, but this week, on Easter Monday, her family told well-wishers Dana had passed away.
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Dana Scatton, 18, gave birth to her daughter Aries Marie at 33 weeks (pictured) after undergoing several rounds of radiation
The teen (pictured hours after giving birth) from Pennsylvania was diagnosed with a rare and inoperable brain tumor in December while seven months pregnant
‘We may never have the right things to say to truly honor the amazing, smart, loving, caring, passionate, incredibly beautiful and free spirited mother, daughter, niece, sister, cousin, friend and independent woman Dana was every day,’ the family wrote on Facebook.
‘She inspired us all to be better than who we are and to keep God in our focus at every moment. She faced the greatest fear of all, death, and smiled back with a grin only God can instill. She fought harder than the toughest warriors known to man and did it with grace and valor.’
DIPG tumors usually start in the brain stem, the part of the organ that’s located just above the back of the neck and connected to the spine. It controls breathing, nerves and muscles that help people see, hear, walk, talk and eat.
There is no known cure for the disease and scant treatment options due to lack of funding for research.
It is a vicious cycle: organizations are reluctant to fund research into something that seems so untreatable; most funding into child cancers goes to leukemia, which is the most researched child cancer.
Without funding and research, it will remain mysterious – and in turn, it will remain difficult for researchers to get funding to dispel the mystery.
Due to the tumor’s location in Dana’s brain, it started taking over her motor functions – making it more difficult for her to walk, talk and breathe.
At points, MRI scans suggested that the radiation treatments were shrinking the tumor, ‘with no signs of blocking her pons,’ the part of the brain involved in the control of breathing, communication and balance.
WHAT IS DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)?
Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumor that can’t be operated on because of it’s location within a crucial part of the brain, called the pons.
This area is responsible for a number of critical bodily functions, such as breathing, sleeping and blood pressure.
The high-grade brain tumor, which mostly affects children, tends to grow quickly and often spreads to other parts of the brain or spinal cord.
Most diagnoses occur in youngsters between the ages of five and 10. The cause of the tumor remains unknown.
More than 90 percent of its victims will die within 18 months of diagnosis, according to figures.
Each year, there are around 100 to 150 new diagnoses in the US. In the UK, it strikes between 20 and 30 each year.
Symptoms include lack of facial control, double vision, headaches, vomiting, weakness, seizures and balance problems.
One of the early indicators of the cancer is a child falling, tripping or losing balance.
According to the National Cancer Institute, clinical trials have shown that traditional chemotherapy aren’t effective.
As a result, many parents of DIPG patients from all over the world have turned to the controversial Dr Alberto Siller, who has a dubious clinic located in Monterrey, Mexico, as a last resort.
The highly controversial treatment, with no evidence of success, involves an untested mix of 11 chemotherapy drugs, injected into an artery in the brainstem that costs $300,000, reported Science Based Medicine.
But doctors who run the clinic have not performed any clinical trials, peer-reviewed studies or published survival and recurrence statistics.
A family from Rogers, Arkansas flew to Monterrey, Mexico in July 2017 for their daughter Addy Sooter, three, who was diagnosed with DIPG, to receive experimental chemotherapy treatment at Dr Siller’s 0-19 Clinic.
In September 2017, an Australian family traveled to Monterrey in hopes of a last-ditch treatment for their then-four-year-old daughter Annabelle Nguyen, who was diagnosed with DIPG when she was two years old.
A year ago, Annabelle’s family said the five-year-old had ‘no evidence of disease,’ a term used when scans and tests can’t find cancer in a person who has been treated for the illness.
But that apparent progress did not last. Both girls since passed away, dealing a blow to parents desperate for answers.
There are now highly-anticipated clinical trials in Australia, the UK and the US. They have reached out to Clinica 0-19 to collaborate or review their work, but the clinic has refused.
Aries Marie was born on January 4 via c-section after Dana’s symptoms from the brain tumor began to get worse
Dana, pictured with her mother Lenore, shortly after giving birth to Aries in January 2017
Dana, the youngest of nine children, told DailyMail.com in December 2017 that right before she was diagnosed she started to experience difficulty speaking, which had become strenuous.
‘I noticed that it took me a little to swallow, then walking got harder and it was even hard to speak,’ Dana said.
She said things got worse in the beginning of December when she went to catch the bus to take her to school and her legs began to feel limp, leaving her too unable to walk properly.
Dana said: ‘I just want to be a wonderful mother’
At first Dana thought it could just be stress from the pregnancy and school.
‘I thought it could be the way the baby was sitting on nerves,’ she added.
Less than two weeks after her initial symptoms, Dana told her doctor what she was experiencing during a routine visit to check on the baby.
She was in the emergency room the next day where she underwent a cat scan and MRI that found a large tumor on the base of her brain.
Within hours of the MRI doctors delivered the diagnosis and prognosis.
Dana said the first thing that went through her mind when she heard the diagnosis was: ‘Is my baby going to be okay?’
Both Lenore and Dana’s father Robert took time off of their jobs at Amazon and a YMCA to take care of their daughter full-time.
The support from family and friends has been overwhelming and Lenore said that since Dana’s brother JJ took to Facebook and made a GoFundMe for medical expenses, people from around the world including Ukraine and Germany have reached out to send their prayers and support.
Dana said: ‘I just want to be a wonderful mother.’