Werdnig-Hoffmann disease (Spinal Muscular Atrophy type-I)

[Guest guest]

Dear all

 

Today a very good friend of mine got a dreadfull diagnosis on his 2

month old daughter. She is diagnosed with Werdnig-Hoffmann disease

(Spinal Muscular Atrophy type-I). A rare disease and untreatable by

western medicine and likely to be fatal within a year.

 

Though very unlikely I would like to put out a call to our community if

anybody is aware of a treatment for this disease or any treatment to

ease the course of this disease.

 

Any information on treatments or any reference to other sources of

information is very, very much welcomed.

 

Thank you

 

Alwin van Egmond