Camille my joy, Camille my pain…

I want to share with you the story of a 4-year old girl who suffers from West Syndrome with cerebral atrophy. This is one of the most severe forms of epilepsy involving infantile spasms. This syndrome appears in babies between 3 months and 12 months old, leaving them, in the majority of cases, with severe after effects.

25 March 2007, Camille is 3 ½ months old. On this fateful day when our life collapsed, her first convulsions started. We went to the CHUV (University hospital in Lausanne) where the doctors told us that this was a simple partial epileptic seizure of unknown origin.

As the days went by, my daughter's epilepsy increased with 10 to 15 seizures a day, and her general condition deteriorated. Ever since then, not a week has gone by without some major health problem and we went back and forth for multiple pathologies to hospitals and numerous specialists: paediatricians, neurologists, allergists, gastroenterologists, ophthalmologists, otolaryngologists (ENT), radiologists, dentists, orthodontists, etc.

4 December 2007 came the terrible verdict from the CHUV: the illness, which until that date had been diagnosed as simple partial epilepsy, had become a West syndrome with the beginning of a cerebral atrophy and I was clearly informed that my daughter would not develop like the children of her age.

The damage caused by the convulsions and the side effects of drugs have such a violent impact, as difficult for the child to endure as the seizures themselves: hence the numerous visits to different specialists in order treat her and find preventive solutions.

Despite a number of trials with new drugs, it was impossible to control her epilepsy; Camille is pharmacoresistant.

Very quickly I had to take the decision to look after my daughter full time and it was impossible to envisage a professional activity or a social life. I couldn’t even receive friends at home. The time spent with them was time taken from my daughter. As the months went by, we inevitably became isolated from social life, surrounded only by hospitals and doctors.

This was mainly a choice… I was told that I could entrust her to an institution where they would take care of her …

I cannot conceive choosing between one solution and another. It is improper to pretend there is a choice when it is a question of one’s own flesh and blood. It is my natural and unconditional duty to take care of my daughter for as long as I live. What sort of mother would I be if I left my child to the care of someone else when she most needs me? The only thing that a perpetually suffering being needs is the love of their mother and their family. And I assure you that I am not only taking on this task through a sense of responsibility or obligation.

Today Camille is four. Her cerebral atrophy has deteriorated with severe psychomotor retardation, which means she has zero autonomy, does not talk, does not walk, can not eat on her own with great difficulties in swallowing. This means that getting her to eat through her mouth represents a colossal task. If this fails, I feed her directly through the stomach via a tube, with meals prepared and blended by home helpers twice a day, 7 days a week. Without their support it would have been impossible and inconceivable for me to cope on my own. Camille’s illness and handicap takes up all of my time nursing her, 24/24 hours monitoring plus all the administrative organisation involved, making appointments, etc. It is impossible for me in addition to assume the domestic chores.  I have to have a full time home help aid because Camille cannot undergo the multiple journeys in noisy and bright places… she systematically ends up with a seizure and nausea.

My powerlessness in front of so much suffering, seeing a child suddenly tortured several times a day is so horrible that I feel shaken…

Sometimes I feel as though I’ve got used to the illness, but that is only an illusion because I know deep down that my rage and my determination to go on struggling will, hope, never leave me.

Despite all these events, Camille is a very brave little girl who has lived through these years of suffering in silence, (she rarely cries) with a lot of determination and dignity. I have only admiration and love for my blue-eyed angel …

Her Mother.