everyone ;

Shanna’s operation was successful. The last E.E.G shows that the epilepsies was almost gone on the side that was operated. There is still epilepsies on the right side but Professor Raftopulos told me that in a year he would operate the right side if necessary. Sadly, I have only gotten bad news. Since I explained to you during Shanna’s operation that we examined pieces of her brain to discover what provoked an epilepsy so aggressive and refractive to the treatments and also to give a name to this type of epilepsy. Today, I was notified to William Lennox for a reunion with a team of neurologists to make a check-up during this reunion. The neurologist told me that she received the results of this biopsy and they are not good. Shanna has a disease in her brain which is the cause of her epilepsy. Shanna’s brain produces a toxic protein (a fish) that kills cellules and brain neurones. If it was the team of St. Luc or the team of William Lennox, they don’t know the cause. Both teams have never seen a similar case to a child of 9 years old. Normally this toxic protein happens when a child got encephalitis or when the child was exposed to massive toxic fumes or the child is alcoholic for a certain amount of years. These three possibilities are not the case of Shanna. Shanna’s epilepsy started around the age of seven years old. We have to find as soon as possible the origin. Next week the whole family will have their blood tested to maybe find the genetic origin. A call has been launched in whole world by the laboratory and the neurologist of St. Luc and William Lennox to discover the same problem to another child in the world. Maybe people will look at my blog and would be able to help these teams. What medications could help her? Do not hesitate to contact the William Center and ask for Dr. Andries. You all have been so much help my little Shanna… Thank you so much… All the nice cards that you have sent to Shanna are wonderful. She is so happy and she put them all in a folder. Kisses from Shanna… Oceanne…and Mouah (me) Martine, Shanna’s mother

(merci à rachel pour la traduction)

 Shanna

Bisous

Souad