A 19-year-old person diagnosed with an incurable brain tumor months before delivery died after more than a year of struggling to find a cure.
Dana Scatton from Pennsylvania was seven months pregnant in December 2017 when a brain scan showed that she had diffuse intrinsic pontine glioma (DIPG).
It is one of the most devastating cancers, affecting 300 children a year, most of whom are younger than 10 years old. No one has survived DIPG for more than 18 months and does not respond to any treatment.
Despite some recent attempts to test moonshot treatments for DIPG in clinical trials, researchers have long struggled to find some glimpse of progress – and have therefore struggled to get funding to keep trying.
Dana freed her daughter, Aries Marie, a month earlier on January 4, 2018, before embarking on radiation therapy, and traveled to a clinic in Mexico that provided a & # 39; remedy & # 39; for DIPG, although they failed 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 of benefactors told her that Dana had died.
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Dana Scatton, 18, gave birth to her daughter Aries Marie after 33 weeks (photo) after having undergone several radiations
The teenager (pictured hours after delivery) from Pennsylvania was diagnosed with a rare and inoperable brain tumor in December while she was seven months pregnant
Misschien Perhaps we never have the right things to say to truly honor the wonderful, smart, loving, caring, passionate, incredibly beautiful and free-spirited mother, daughter, niece, sister, nephew, friend and independent woman Dana, & # 39; family wrote on Facebook.
& # 39; She inspired us all to be better than who we are and to keep God in our focus at all times. She faced the greatest fear of everything, death, and smiled back with a grin that only God can inspire. She fought harder than the toughest warriors known to mankind and did it with grace and courage. & # 39;
DIPG tumors usually start in the brainstem, the part of the organ that is just above the back of the neck and is connected to the spine. It controls the breathing, nerves and muscles that help people see, hear, walk, talk and eat.
There is no known cure for the disease and few treatment options due to lack of funding for research.
It is a vicious circle: organizations are reluctant to fund research into something that seems so untreatable; most funding for childhood cancer goes to leukemia, the most investigated childhood 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.
Because of the location of the tumor in Dana's brain, it began to take over its motor functions – making it harder for her to walk, talk, and breathe.
At points, MRI scans suggested that the irradiation made the tumor shrink, & # 39; without any signs of blocking her fingers & # 39 ;, the part of the brain involved in monitoring respiration, communication, and balance.
WHAT IS DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)?
Diffuse intrinsic pontine glioma (DIPG) is a rare type of brain tumor that cannot be operated on because of its location in a crucial part of the brain, the so-called punch.
This area is responsible for a number of critical body functions such as breathing, sleep and blood pressure.
The high-quality brain tumor, which primarily affects children, tends to grow rapidly and often spreads to other parts of the brain or spinal cord.
Most diagnoses occur among young people between five and ten years old. The cause of the tumor is unknown.
More than 90 percent of the victims die within 18 months of diagnosis, according to figures.
Every year there are around 100 to 150 new diagnoses in the US. In the United Kingdom it falls between 20 and 30 every year.
Symptoms include a lack of facial control, double vision, headache, vomiting, weakness, seizures, and balance problems.
One of the first indicators of cancer is a child who falls, stumbles, or loses balance.
According to the National Cancer Institute, clinical studies have shown that traditional chemotherapy is not effective.
As a result, many parents of DIPG patients from around the world have turned to the controversial Dr. Used to Alberto Siller, who has a questionable clinic in Monterrey, Mexico, as a last resort.
The highly controversial treatment, without proof of success, involves an untested mix of 11 chemotherapy drugs injected into an artery in the brain stem that costs $ 300,000, Science Based Medicine reported.
However, doctors who run the clinic have not performed clinical examinations, peer-reviewed examinations, 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 were diagnosed with DIPG, to undergo experimental chemotherapy treatment at Dr. 0-19 Clinic. Siller.
In September 2017, an Australian family traveled to Monterrey in the hope of an ultimate solution for their then four-year-old daughter Annabelle Nguyen, who was diagnosed with DIPG on her second birthday.
A year ago, the Annabelle family said the five-year-old did not have & # 39; proof of illness & # 39; , a term used when scans and tests cannot find cancer in a person treated for the disease.
But that apparent progress did not last long. Both girls have since died and have slapped parents desperate for answers.
There are now long-awaited clinical trials in Australia, the UK and the US. They contacted Clinica 0-19 to collaborate or assess their work, but the clinic refused.
Aries Marie was born on January 4 via a c-section after Dana & # 39; s symptoms of the brain tumor got worse
Dana, pictured with her mother Lenore, shortly after the birth of Ram in January 2017
Dana, the youngest of nine children, told DailyMail.com in December 2017 that just before she was diagnosed, she had trouble speaking, which had become very strenuous.
& # 39; I noticed that it took me a little to swallow, and then walking became more difficult and it was even difficult to talk, & # 39; said Dana.
She said it was going to get worse at the beginning of December when she wanted to take the bus to take her to school and her legs went limp, making her unable to walk properly.
Dana said: & # 39; I just want to be a fantastic mother & # 39;
Initially, Dana thought it could only be stress from pregnancy and school.
& # 39; I thought it could be the way the baby was nervous, & # 39; she added.
Less than two weeks after her first symptoms, Dana told her doctor what she experienced during a routine visit to check on the baby.
The next day she was in the emergency room where she underwent a cat scan and an MRI scan that found a large tumor at the base of her brain.
The diagnosis and prognosis were delivered within hours of the MRI doctors.
Dana said the first thing that came to mind when she heard the diagnosis was: & # 39; Will my baby be okay? & # 39;
Both Lenore and Dana & # 39; s father Robert took the time off from their job at Amazon and a YMCA to take care of their daughter full time.
The support of family and friends was overwhelming and Lenore said that since Dana & J's brother JJ went to Facebook and made a GoFundMe for medical expenses, people from all over the world, including Ukraine and Germany, have been gesturing and giving support .
Dana said: & # 39; I just want to be a great mother. & # 39;