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Chaque Vie est unique ! Chaque vie est semée d'obstacles souvent imprévisibles à accepter !… Surtout à comprendre … A affronter puis à pouvoir surmonter … !

Celle de Shanna me l'a enseignée … Rien ne me préparait à une telle expérience ….

Aujourd'hui, le coeur en lambeau, mes pensées s'envolent vers ce jour béni …. 20 Août 1996 à 18H20 …. Je suis « MAMAN » pour la première fois ! Le coeur comblé, Je découvre émerveillée ma petite perle : SHANNA.

Les semaines, les mois, les années s'écoulent, dans la joie, les rires, les cris,les premières syllabes, toutes ces petites expressions qui harmonisent mon quotidien d'une magie appelé : BONHEUR !

Juillet 2004, cette enfance heureuse et protégée, le nid douillet et chaleureux s'effondre comme un château de cartes … Rentrée de l'école les deux mains posées sur sa tête, elle m'exprime une douleur insoutenable. Sans hésitation, c'est l'hôpital que nous rejoignions … malheureusement elle y séjournera !

Shanna (8ans) est atteinte "d'épilepsie sévère bitemporale réfractaire aux traitements" d'après les neurologues, c'est une maladie orpheline. Elle est hospitalisée au centre neurologique william lennox à ottignies....

Chaque jour, impuissante, je regarde ma petite fille se dégradée. La situation devient ingérable, la fréquence des crises, les troubles de son comportement inexpliqué, les cris aigus, la perte du langage, je l'a regarde se noyer dans un océan de démence. Je suis là, face à elle, complètement anéantie.

Le seul espoir qu'il me reste est l'opération au cerveau qui consiste à isoler le foyer épileptique .
Cette lueur me regorge d'espoir et de confiance, mais une appréhension persiste : la crainte d'un espoir illusoire …. !

Each Life is unique, and when we learn that we are to have a child, our first hope is that they will be healthy, with all of their fingers and toes. But sometimes that does not come to pass. Sometimes something happens that is very difficult to accept, especially when we learn that our child will not live for long. But with Shanna, I learned that acceptance is sometimes not a choice.

My heart breaks when I remember August 20th, 1996 at 18:20: a blessed day! I became "Mom" for the first time! My heart was full of love and wonder – my small pearl, SHANNA, was here!

 The weeks, the months, the years passed in joy. The laughter, the cries, the first syllables, all those small expressions which make up my memories of a magic called HAPPINESS! My Shanna, strong of character, surprised me and filled me with pride, as she continually excelled in her studies.

 In July of 2004, this happy and protected childhood, our beautiful life together, crumbled like a house of cards. Returning from school, hands held to her head, Shanna complained of severe pain. We rushed to the hospital and Shanna was immediately admitted.

Shanna, at eight-years-of-age, was diagnosed with Refractory Bitemporal Severe Epilepsy. According to the neurologists, the etiology, or origin, is unknown. Medical cases like this are called orphan diseases. That is, they are so rare, that there is no funding and little research done on them. Nevertheless, Shanna was hospitalized in the neurological center of William Lennox in Louvain-La-Neuve, Belgium. Calls were made to various countries by the team of the laboratory of St Luc, and those of William Lennox, to determine if anyone knew of a similar case.

 Helplessly, I watched my little girl deteriorate day after day. The situation became unbearable, the frequency of crises, the turmoil of her unexplained behavior, the sharp cries, the loss of language; I felt as if Shanna were drowning in an ocean of insanity. I was completely destroyed.

 The only hope which remained was an operation which would isolate the parts of the brain affected by the epilepsy. This ray of hope kept me confident that Shanna would be cured, yet the fear that it would fail haunted me.

 Shanna was operated on March 22nd, 2006 by the team of surgeons of the private clinics of St Luc. After twelve-and-a half hours of surgery and of waiting, the operation was a success, but the news was not good; the biopsy revealed that Shanna’s condition was caused by the protein Tau (a toxic protein) which destroys the cells of the brain. Genetic research would also be necessary.

Seized by fear, incapable of the least word, the least gesture, I realized that I was going to lose my little girl.

 The disease which Shanna has is called Neuroserpin, which causes ageing of the brain (standard Alzheimer’s). It is degenerative, and in Shanna’s case, incurable. It is a defective gene which cases the neurons of the brain to be destroyed. No treatment is known to date.

Shanna is now prisoner of a world which she did not choose. How do I reach her so that I can tell her how much I love her, how proud I am of her, how proud I am of her courage? How can I make her hear me and know that she understands me?

 A multitude of feelings fill my mother’s heart: rage, hatred, sorrow, impotence, guilt.

My body trembles, I want to howl, howl with all of my strength! Each second, each moment represents a battle against the inevitable. I live sickened by the injustice of our destroyed lives, this fate which we did not choose but which we must face.

As a last resort, we went to Lourdes in 2006, in the hope that the sky is not empty. I cry on the inside, but I must keep a smile on my face for my child.

As the wheat germ before the storm, we become stronger, more patient!

Martine, the mom of Shanna & Oceanne.