Hi everyone,
My name is Larissa Emiliano Rodrigues Costa, and I am a 28-year-old single mom to a wonderful 7-year-old boy. Since November 2023, I’ve been battling severe health issues, resulting in eight hospitalizations so far. I have been diagnosed with Familial Mediterranean Fever, an ultra-rare, incurable autoinflammatory syndrome caused by a mutation in the MEFV gene. This condition leads to numerous complications, including sepsis, recurrent gastrointestinal infections, and lung and kidney infections. These are not bacterial infections but inflammatory attacks from my own body.
The inflammations mainly target my abdominal organs, causing excruciating pain that requires intravenous medications like morphine, fentanyl, and methadone to manage. I also need IV medications to help me eat and sleep.
When I’m not in the hospital, I rely on strong and expensive medications to manage my pain, such as Buprenorphine patches, which I need to change every five days.
Despite all these efforts, these treatments only manage the symptoms. For effective treatment, I need a genetic sequencing test for the MEFV gene. Unfortunately, this test is very expensive and has been denied by my health insurance. Without it, I cannot receive proper treatment or access a critical immunobiological medication called ILARIS (canakinumab), which I need every 45 days. Each dose of ILARIS costs approximately $20,000.
As a single mom, my biggest hope is to be there for my son, to watch him grow, and to be able to take care of him. Your support can make a significant difference in my life and health. Any contribution, big or small, will be deeply appreciated.
Thank you for your kindness and generosity.
Sincerely,