Camille's surgeries (July, 2003)

Camille was operated on in April and June, 2003, two serious but vital operations. She must have another operation in August to remove the external pins.

Here is a picture of Camille with the pins in place

Thanks to your gifts, the two first surgical procedures were able to be done under normal conditions, with her mother being with her.
The operation itself went quite well, but the breaks done during the operation have unexpectedly calcified, which has resulted in an insufficient movement of the facial bones of her upper jaw. We are waiting for the surgeons to decide exactly what treatment is going to be used to fix that problem, which keeps her sinuses from working normally and makes eating difficult because of the lack of alignment between her jaws.
The money which we received previously has now been entirely spent on medical expenses, mileage expenses from and to the hospital and her mother's accomodation expenses in a "parents' house" near the hospital in Lille.

The X-Ray of Camille's Skull

We can see the two external pins (the parallel threaded bars) and their anchoring points in the skull bones.

These threaded bars had to be turned twice a day, 2mm each time, for a period of four weeks after the operation. This was very painful for Camille and provoked a "trigeminal neuralgia", which is a disorder of the fifth cranial (trigeminal) nerve which causes episodic intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed - lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw.

The Chiari syndrome operation can be visualized here as well: the last vertebra is cut near to its junction with the skull bones.

Camille in hospital after her first operation

Chiari syndrome (2002)

After various exams, including MR imaging in March, it was discovered that Camille has another malformation: Chiari syndrome. (cerebellar tonsils going down the brainstem). This latter disease is progressive and causes paralysis in a relatively short (6 months) or sometimes longer (5 years) period of time, as well as other impairments.

Crouzon syndrome (2002)

Is a genetic disease characterized by an early suture of the bones of the skull, preventing it from increasing in size and disturbing the growth of the facial bones. Camille has already been operated on twice for this, the first time at the age of 2 months, the second time at the age of 2 years. These two operations have allowed Camille to live and study normally like any other child, even though her physical appearance causes rejection by many other children and even grown-ups.

Call for Help, 2002 (archive)

Since April, 2002, Camille has had a lot of problems because of her malformations and in September, 2002 her doctors have ordered her to reduce all her activities. Camille goes to school at most 2 half-days a week, so as not to loose contact with the other children .

Camille will certainly not be able to go back to school in September, but, if everything goes well she could be gradually return to school, beginning in November.
-Her mother, a single parent, will be compelled to stop working to help Camille - which will cause a financial loss, since she is a freelance artist and arts teacher,and, as such, is not eligible for any help from social organizations.
She simply cannot cover some of these expenses without help.

Letter from Camille in 2002

Hello,

My name is Camille.
I am 14 and I live in La Bruffière, Vendée, France. I was born with a genetic disease: Crouzon syndrome.
This disease has to be operated on in three stages.
My last operation was scheduled for June, but, during an exam, the medical team discovered the fact that I have another genetic disease as well: Chiari syndrome
Since November, 2002, I have not been able to attend school regularly. I am home educated when my health allows it.
This second genetic disease changes a lot of things since I will have to have an emergency operation very soon, on the 28th of April in Lille (more than 400 miles from my home).
To be able to come with me and help me in Lille my mother must stop working
I will stay in hospital for 8 to10 weeks .
All expenses linked to my operation are not covered by our Social security and insurances.

For instance : The expense for my mother to stay in Lille while I'm in hospital.
Thanks to all!!!
Camille
Thanks to Christopher for his help.with the English version