A.L.D.
AdrenoLeukoDystrophy


In October 1993, Sebastián Santa María was diagnosed with a very rare hereditary disease called AdrenoLeukoDystrophy (A.L.D.), a progressive palsy of the nerve system. After three long years of extreme suffering, this horrible disease eventually lead to his death in Lausanne, Switzerland, on October 20, 1996. He died peacefully at home in the arms of Manu, his loyal and longtime companion, who never left his side and who nursed him until the bitter end. Sebastián got only 37 years old. More in the BIOGRAPHY ..
 
One of the goals of PIANOSANTAMARIA.com is to support the battle against this awful disease, by means of publicity and information and, if possible, also with financial help.


More about A.L.D. in the Wikipedia.

A scientific, yet still relatively comprehensible article by Prof. Patrick Aubourg.

More about Oliver Liley (1992-2006), victim of A.L.D., in Olivers Army.

More about the George Miller movie Lorenzo's Oil, featuring Susan Sarandon (Oscar nomination), Nick Nolte & Sir Peter Ustinov.
 
 

If you have links that you think should be listed here, please eMail us - thank you!


 
 
The grave of Sebastián Santa María in Mallarauco, Chile
(click to enlarge)

 

 
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