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September 2011 :
A day with Fabienne Larouche to visit the recording studios of "30 vies"

 

2011 :
Part of the profits will be given to the foundation. Come get ready for fall with our advices and to drink a good glass of wine. Price and sample will be given away.

 

Léa will soon be 11 years. She said the WHO without neuroblastoma at the age of 13 months while everything was fine ... We live in the North East of France.

WHO has said a few days. After a Sunday for the doctor because I thought that Leah showed small movements of the eyes and a slight tremor of the head from time to time, we saw a pediatrician the next day which is not found at all and m 'asked to see an ophthalmologist this week and it took us an appointment at children Hospital, 100 kilometers from home.

The state of Lea then degraded with balance difficulties. When we went to visit, Lea did more standing, had difficulties to keep seated crisis was really terrible day and night, could not stand at all car trips.


Léa


We try different treatment (different cortisones, plasmapheresis). I have seen several specialist doctors for advice on rituximab. Some were dead set against but we try with his doctor because Leah was steroid resistant and steroid dependent.

Following treatment with Rituximab, we were able to stop the cortisone in 2006, which began to cause osteonecrosis of bones. We compensate with treatment not calcium and vitamin D which has made ​​a bone densitometry in normal.

Remain present learning difficulties. Leah likes her school, she is in class of his twin brother, but she can not follow the normal cycle. French lessons and math are suitable but I think it is not enough. We have no local structure close to our home.