The stone girl

Hello,

My name is Angélica Celeste, I am 13 years old, I am studying the 1st grade of secondary education. I live in the Municipality of Matehuala, in the State of San Luis Potosi, Mexico.

Almost 1 year ago I was diagnosed with Fibrodysplasia Ossificans Progressiva syndrome, a condition that generates ossifications (bones) where they should not be. exist and that cause me a lot of pain, plus it is not curable. Everything I receive must be intravenous, since ossifications appear in my muscles and these cause my body to slowly harden.

For 2 years I was misdiagnosed and treated for cancer. Seeing that my illness was worsening, they sent me to palliative care, but my mother did not accept it. They did studies on me and found that it was FOP syndrome.

Thanks to a geneticist in Spain, doctors and specialists in Guadalajara and Mexico, as well as the international association of FOP Syndrome, I am waiting for an experimental treatment in the US, but it is very expensive, since I am 1 case in 2 million, so there are no doctors who can support me where I live, there are no studies they can do on me due to the condition of my body.

I need this treatment to stop ossifications and be able to have a better quality of life, since they are very painful.

I lost the mobility of my neck, arms and back, so I need help to eat, dress and go to the bathroom.

The money I need is for travel, medications, studies and above all to be able to receive this experimental treatment. Also, my mother is blind, so it is difficult for her to work to support me.

It would make me very happy if you used the [Help by sharing] button to share my project!