Battle for Olympia
Donation protected
On July 28,2017 my 23-year-old daughter Olympia began exhibiting erratic behavior, loss of memory, anxiety, and hallucinations. She was incorrectly diagnosed and admitted to a psychiatric clinic in Toulouse. Six days later, Olympia was urgently transferred to the Intensive Care unit in Purpan Hospital. She was in a coma unable to breathe on her own and reacting only to pain.
Her new diagnosis was Auto-Immune encephalitis NMDA Receptors. In an instant life changed for Olympia and for our immediate family. Auto-Immune Encephalitis is an Orphan disease and it is usually triggered by an ovarian teratoma but Olympia’s teratoma was located in the Mediastinum, behind her heart and lungs.
To date, Olympia has spent 372 days in hospital with four of those months in intensive care and in a coma fighting for her life. She has had open thorax surgery to remove the teratoma that was cancerous and every month she has chemotherapy treatments to suppress her immune system. Her encephalitis has caused her to suffer from grand mal seizures and she is taking three different medications to control her seizures. Her antibodies are still agressive and she still suffers from the encephalitis and the continuous seizures have cause brain lesions.
For those of you following #battleforOlympia you know that for the 372 days of her hospitalization I was making the 220km round trip to be by her side. With all the thousands of extra kilometers on our vehicle, the automatic transmission failed and we were told that it was not worth sinking over €6000 on a car with 300 000km. We are looking to find a replacement in order to continue with our day to day responsibilities. The good news is that as of today we start a new chapter with some of the same challenges and some new ones but on our "home turf". Olympia is home!!!
The French Securité Sociale (Universal Health Care Insurance) covers the majority of the care Olympia needs in order to continue her treatment at home but there is an important amount that will not be covered. For instance, she needs 8 hours a week minimum of occupational therapy that is not covered by the insurance. The hourly rate is between €40-€45. The carers that will be coming to the house daily to help Olympia are covered in part by the insurance and there is a monthly amount that will come out of pocket. This leaves us with few alternatives as even with my work, and my military widow's pension, it is impossible to meet the financial demands for her care and to continue caring for her younger sister who is autistic and has special needs of her own.
Olympia is a case study as she is the first person in France to have a resistant form of this disease. She has not reacted to the first and second line treatments hence the doctors can't tell us what to expect. They estimate that we need to continue the treatments for another 12 to 18 months in order to have a better diagnosis.
We thank you for your continued support during these most difficult times , for your thoughts and your kind words. Sharing this link costs nothing and it gets the story out. Help us continue the #battleforOlympia
Her new diagnosis was Auto-Immune encephalitis NMDA Receptors. In an instant life changed for Olympia and for our immediate family. Auto-Immune Encephalitis is an Orphan disease and it is usually triggered by an ovarian teratoma but Olympia’s teratoma was located in the Mediastinum, behind her heart and lungs.
To date, Olympia has spent 372 days in hospital with four of those months in intensive care and in a coma fighting for her life. She has had open thorax surgery to remove the teratoma that was cancerous and every month she has chemotherapy treatments to suppress her immune system. Her encephalitis has caused her to suffer from grand mal seizures and she is taking three different medications to control her seizures. Her antibodies are still agressive and she still suffers from the encephalitis and the continuous seizures have cause brain lesions.
For those of you following #battleforOlympia you know that for the 372 days of her hospitalization I was making the 220km round trip to be by her side. With all the thousands of extra kilometers on our vehicle, the automatic transmission failed and we were told that it was not worth sinking over €6000 on a car with 300 000km. We are looking to find a replacement in order to continue with our day to day responsibilities. The good news is that as of today we start a new chapter with some of the same challenges and some new ones but on our "home turf". Olympia is home!!!
The French Securité Sociale (Universal Health Care Insurance) covers the majority of the care Olympia needs in order to continue her treatment at home but there is an important amount that will not be covered. For instance, she needs 8 hours a week minimum of occupational therapy that is not covered by the insurance. The hourly rate is between €40-€45. The carers that will be coming to the house daily to help Olympia are covered in part by the insurance and there is a monthly amount that will come out of pocket. This leaves us with few alternatives as even with my work, and my military widow's pension, it is impossible to meet the financial demands for her care and to continue caring for her younger sister who is autistic and has special needs of her own.
Olympia is a case study as she is the first person in France to have a resistant form of this disease. She has not reacted to the first and second line treatments hence the doctors can't tell us what to expect. They estimate that we need to continue the treatments for another 12 to 18 months in order to have a better diagnosis.
We thank you for your continued support during these most difficult times , for your thoughts and your kind words. Sharing this link costs nothing and it gets the story out. Help us continue the #battleforOlympia
Organizer and beneficiary
Anna Maria SIRINIDES
Organizer
Berriac, A9
Anna Sirinidou
Beneficiary