I won't be able to do it soon...

Freja is without a doctor, occupational therapist and physiotherapist... if she had diabetes she would never have been treated this way. She is very tired these days because it takes her strength to be at school, has to sit in her work chair that needs adjusting but without an occupational therapist who stopped WITHOUT notifying us at all. I reported the doctor to the patient committee over a month ago when he stfu assumes that Freja has a serious connective tissue disease, the words "children should be children" seem to be a populist word to use, then hypermobility to drive that line and completely ignore that she has Marfan and with that syndrome comes responsibility and adaptation for Freja to feel good and just be a child!

Yes, I can't stand it anymore, school needs a certificate and we are without a doctor. Yes, I have been struggling to write and chase people since she was diagnosed when she was three years old, enough is enough!!!! Soon I will contact the media about this! It's not wise to be treated this way when you get a rare diagnosis🤬🤬🤬 What the hell is wrong with healthcare today, don't you understand that you are hurting her more by ignoring her! She has the right like everyone else to live a "normal" life and get help to fix her life with the support and help she needs.

I'm so low and so sad it's not wise 😩😭