Adam kansouh Persson is a sweet, 3-year-old little boy from Sweden.
He loves Paw Patrol and could spend hours watching any Marvel superhero movie, dreaming of one day becoming a superhero.
Over the summer, Adam began having trouble breathing and swallowing. Doctors repeatedly reassured his mother, Cornelia, that Adam was simplyhaving an allergic reaction to pollen. But Cornelia knew there was something much worse happening to her little boy.
After months of watching her child suffer, Cornelia took Adam back to the hospital and demanded that furt
her testing be done. That day, August 9, 2022, her worst fear was confirmed. Adam was diagnosed with DIPG.
In the months leading up to Adam’s diagnosis, Cornelia had discovered a girl on social media that had DIPG.
“Something told me that I must follow this family’s journey,” explained Cornelia. “I had a strange feeling that Adam was suffering from a brain tumor,
and even though I had to convince several doctors to test him, I was right.”
Cornelia was horrified to learn that Swedish healthcare would only provide palliative care due to lack of knowledge and successful treatments for DIPG.
Desperate to save her son, Cornelia searched the internet for options. She discovered My DIPG Navigator, a ChadTough Defeat DIPG program designed to give one-on-one support for families battling DIPG, where she was connected with a nurse navigator named Ashley.
With Ashley’s help, Cornelia was able to get Adam into a promising clinical trial in Switzerland led by pediatric neuro-oncologist Sabine Meuller. The trial, which Adam began in December, combines the drugs ONC201 and Paxalisib, both unavailable in Sweden.
Adam is currently tolerating the medicine well and hasn’t had any serious side effects. However, the Swedish healthcare system does not cover any of the medical costs, so the family is struggling to pay for the trial on their own.
“We are so blessed to have this opportunity,” said Cornelia. “I’m praying this will save my son, but regardless of the outcome, this trial could save other children facing this horrible disease.”