Welcome to the side of the "little angels"
Our history began in the year 2000.
I was in the 34. Weeks pregnant and put me in my future maternity clinic before, ahnend nothing of what soon would send me. Already during this ultrasound I learned, that "something" with my baby and was not agree with both the University Hospital in Cologne, as well as in the KKH Waldbröl Sonos sent to various.
But what exactly clear answers to my child was in order, I do not and so I avoided any control events and enjoyed the time until the big countdown. I did it does not matter what my baby was not okay, it was my baby and everything else played no role.
On 14.6.2000 was it as far as. After some introductory experiments made my daughter on the arduous path to the outside. In the circle room were my words too many doctors and while my daughter and I have abrackerten at birth, eerie silence reigned.
There, and then she was there .... ... quite still blue .... ... twisted. and strange.
Of course, I had no opportunity to my daughter in to calm, because the doctors had to take care of them and they stabilize.
After two weeks, then finally a vague diagnosis: Dwarfism and after another two weeks and a tissue analysis:
Chondrodysplasia punctata autosomal-rezessiv
The information, I (sometimes only on a very research demands) received were as follows:
My baby died early .... In a few days or maybe only in a few weeks. It may be due to the calcifications in all its joints and a Tetraspastik not move. Eventually, an acid in the blood (the so-called Phytansäure; all the people in carrying) so concentrated, that it attacks the organs and my baby to die. Or a normal infection leads to early death.
Uff .... I do not hear how beautiful my baby is, I got very few congratulations to the birth and I had plenty of rest .... peace to think and rest for my baby to get to know.
Today, 8 Years later, I am infinitely grateful for the honesty of the doctors and the associated chance of my child something special to see.
With each passing day, with every hour and every moment, yet so little was clear to me, what a wonderful creature I was entrusted. I am not a devout man, but I believe it, that only special people and special children, as in this case an angel to get the page.
Lisa-Marie is now with her 8 Years, is still a baby purely optical: It is 75cm small, weighs just 6 Kilo and drink all the brave one and a half hours their bottle.
You see it does not immediately, that they are not "normal" child is. But who takes the time, to prevent it and they will respond to this uniquely warm and sincere smile rewarded. There are very few people, have the gift of other people in the soul to see and feel them to give, that life is a gift .... Rhizokids but can.
On my website I want to take this rare disease and parents imagine such angels the opportunity to find like-minded. There are more than you think ... the world ... but here in Germany the probability of having a child with RCDP 1:800.000 Live births per hospital.
On the next pages I will be both the clinical description of the disease , Lisa, as well as in words and pictures imagine.
And one thing I would like to inform you on the journey:
It is not a nice feeling parent a disabled child to receive, but believe me .... It arouses forces in a, you never thought possible!
I wish you much fun on the side of the little angels
