\u201cI just want to be independent,\u201d Marissa told news.com.au.<\/p>\n
\u201cPeople have no idea what it is. They look at me and think I look fine.\u201d<\/p>\n
Marissa\u2019s symptoms started in high school. She struggled to concentrate, felt constantly sick, and was often sent home vomiting or in pain. In 2022, she managed to graduate, but months later her health took a steep dive.<\/p>\n
![\"Teenage](\"https:\/\/www.europesays.com\/us\/wp-content\/uploads\/2025\/07\/19-years-old-sydney-s-107888988.jpg\")
Marissa has Functional Neurological Disorder (FND), a complex and poorly understood condition that disrupts how the brain communicates with the body. Gofundme<\/p>\n
She developed Postural Orthostatic Tachycardia Syndrome (POTS)<\/a> that left her fainting every time she stood, sometimes collapsing on the stairs or in the shower. She\u2019s had seizures that left her shaking violently on the floor, with her two most recent ones on Monday.<\/p>\n For five weeks earlier this year she was completely bedridden, unable to stand without passing out. She\u2019s since been admitted to hospital for a week at a time \u2014 but doctors usually just check her vitals, give her some pain medication and send her home.<\/p>\n \u201cNo one really knows what to do,\u201d she said. \u201cI\u2019ve had so many tests, they all come back fine.\u201d<\/p>\n And that\u2019s the kicker; People with FND do appear \u2018fine\u2019 on paper, but inside, their body is fighting for its life.<\/p>\n After seeing doctor after doctor and being told it was all in her head or it was \u2018just anxiety\u2019,<\/a> Marissa began to lose hope.<\/p>\n \u201cMy body was shutting down, and I was overwhelmed and exhausted beyond words.<\/p>\n \u201cThen one afternoon, everything changed \u2014 my body started shaking violently. I lost control. I had a full-body seizure.<\/a> My eyes locked shut. I couldn\u2019t speak, move, or cry for help.<\/p>\n \u201cThat was the moment I knew \u2014 this wasn\u2019t just anxiety. It was real.\u201d<\/p>\n Marissa\u2019s younger sister Helena, now 17, was diagnosed with FND at just 14. Helena also collapses, suffers seizures and lives with chronic pain, though Marissa\u2019s condition is more severe.<\/p>\n Their mother Sylvia said that although it hasn\u2019t made it any easier, she was able to recognize Marissa\u2019s symptoms earlier.<\/p>\n \u201cIt\u2019s just heartbreaking,\u201d said Sylvia.<\/p>\n \u201cI want them to be better. There\u2019s no help, there\u2019s no answers, it\u2019s so frustrating.\u201d<\/p>\n \u201cMarissa should be worrying about who she\u2019s going to party with, not whether she can stand in the shower.\u201d<\/p>\n \u201cI just research and push doctors to listen. But I can no longer work or provide,\u201d she said tearfully.<\/p>\n Sylvia has had to quit working for their family\u2019s dog grooming business to take on the role of full-time carer in her home.<\/p>\n \u201cWe may need to look at selling our house. It\u2019s a constant battle,\u201d she says tearfully.<\/p>\n The family spends tens of thousands of dollars every year on weekly psychologists, fortnightly psychiatrists, cardiologists, neurologists, pain specialists, rehabilitation programs and even hypnotherapy.<\/p>\n Marissa is also taking over 10 medications to help manage her condition, including for her heart and seizures.<\/p>\n Earlier this year, Marissa was also diagnosed with autism level 2.<\/a> Her care team believes autism contributed to her nervous system \u201coverloading,\u201d triggering the FND.<\/p>\n Marissa\u2019s autism diagnosis has meant the family now has access to minimal NDIS support but FND and POTS are yet to be recognize on their own.<\/p>\n Recently, Marissa\u2019s family surprised her with a visit from a service dog <\/a>named Moose.<\/p>\n \u201cWhen Moose visited Marissa, her heart rate dropped drastically,\u201d said her mum.<\/p>\n Moose carries a hefty fee of $30,000 but will allow Marissa to regain a sense of independence and a better quality of life.<\/p>\n He will be able to notify her of oncoming seizures or fainting spells. He will also be able to press a doorbell that sends an alert in case of emergencies and assist Marissa in learning how to walk again using his walking frame.<\/p>\n![\"Young](\"https:\/\/www.europesays.com\/us\/wp-content\/uploads\/2025\/07\/19-years-old-sydney-s-107888987.jpg\")
Marissa De Santis and service dog, Moose. Gofundme<\/p>\n