I have three children and my first child is affected by this disease!!! She is nine years old today and her first six years of life were difficult . She was born before 2002, thus nothing could have been detected at birth. Kept at home until her third birthday, she then began to get over-infected very regularly (more than her small friends). No one took me quite seriously since she is my first child. Then, one night in 2003 at 05 o'clock in the morning her cough was that bad that we had to take her directly to the emergency yard: she had vomited all over her bed; she had vomited some bright red liquid. My daughter, her teddy bear, her bed sheets and the floor…everything was covered with blood, she roared with fear or with pain, I wasn’t sure! She was hardly three years old at the time!!!
Diagnosis from the emergency yard: rare bloody pneumopathy and 15 days of antibiotics was offered as a treatment.
Then she had another cure, and another one, with another antibiotic followed by one, two, and then three surgical operations to avoid repetition of otitis. However, the cough, the otitis, the pharyngitis, the “colds» were still there! …Still no name to describe these symptoms.
Nine months later, in the middle of the summer, she was still sick. And there, a pulmonologist decided «to avoid the risk of cystic fibrosis” and he made her take a test in the sweat.
The first results were neither obvious nor clear. After her second day at the hospital, while the others had fun in the beach, she had to take a second test and results were not significant, more doubtful… Then on the 5th of August 2004, she has been taken a sample of blood to make a genetic study. We only got the results on January 12th, 2005…
All this time, my daughter was still sick and I feared at any time to see her vomiting “her guts” again.
I asked myself the question of what was going to be our future???
When I finally got the results, nothing counted except my daughter’s well being. The only thing that I really wanted was to hold her in my arms for ever, to have her inside of me once more so that I could protect her... However, I had to stick to reality, assume my job, pay my bills … Everything seemed to be against me, even the health of those I cared for the most ... Each day seemed to be similar to that terrible day that I had just lived, but in a way, I had been so afraid of the day before, that things felt better and I hoped that things were going to stay that way!!!
Two years passed by, leaving that way, and then this fragile state got ruptured again. The scenario of the bloody pneumopathy reproduced itself while I was breast-feeding my newborn child. I had to finish breast-feeding with firemen on my side and leave to the hospital with my daughter, leaving my second child behind and waiting for his next feed (at the emergency yard!!!)
A new treatment was established, besides the physio every day, and within a few months, things got better… For those last two years, I can say that things are fine, she’s got no more problems growing normally (her size and her weight are correct), her bronchi is almost fine and she is dealing with the same classic health problems as a child of her age. But who knows how long it is going to last for???
