HUM-MOLGEN DIAGnostics/Clinical Research


PT REQ.: Ceroid Lipofuscinosis

Where I can find help?

Hallo, I'm Erika I am seven years old and since I was three, I am affected by a terrible disease, called "Ceroid Lipofuscinosis". It was diagnosticated at the National Neurological Center "Carlo Besta" in Milan, Italy.

All the doctors agree to say that there is no care, and so my life is at the endtrack. I lived normally for only three years .Today, I am able neither to walk nor to speak but I really would start to live again like when I first felt bad, before september '93.

I need and I am asking for researchers' help all over the world: I really need their help. I have got a younger brother, 15 months old now, and untill now I don't know if he is sane or not.

Please help me for him also. I have nothing to lose. I am ready to try every kind of medicine that is being studied or experimented. If I only could have my and my parents happiness back!

Apparent patient location: Sardinia - Italy