Mon diamant! mon trèfle à 4 feuilles,unique elle est extra-ordinaire.
– a besoin d une chaise roulante pour ses déplacements car plus de tonus musculaire..fatigue et douleurs
Hello..I call myself Chloe..I am 16 years and a half Mom will tell you a piece of my story It took 16 years and 5 months to finally find the name of the disease: KAT6A I am here alone to date diagnose in Belgium 16 long years of fighting … knocking on all the doors .. an obstacle course … of pain … of fear..of doubt … of tears … of anguish and impotence and especially alone in front of his doctors who did not understand anything .. A special thank you to my geneticist who never give up and to the cardiologist who has never abandoned us … and has mamy and grandpa But we have never lost hope Chloe is a real little warrior … has already gone through far too much surgery and suffering from her 16 years His smile, his strength, his joy, his courage, his love, his perseverance.
A real wonder My diamond! my clover with 4 leaves, unique it is extra-ordinary.
Born at 39 SA..2kg820..TN: 47cm .. NCP: 31,5cm
-Microcephaly pre and post natal
-Seated at 2 years old..and walking at 2 years and 8months Epilepsy
-No language..a date say a few words about thirty and the most beautiful “mom I love you” at 15 years old and tries to be understood
-Arte under right retro esophageal keyboard
-difficult food with need for gastrostomy and nyssen at the age of 2 years. To this day does not eat anything other than liquid by bottle or straw
-noise intolerance, mental retardation
-sleep agitated and very difficult
-Operate a CIA at 5 years
-passed mitral valve
-amyotrophie muscular atrophy weighs only 38 kilograms
-Feet and hands always cold
-Hyperlaxitis articular intense pain in the limbs: derived from morphine Inverted
-instability of luxable patella
-Brainstem dysfunction responsible for major food function disorder
-Operate teeth twice too small jaw aneurysm of ascending aorta stage 3 Betablocking
-serious constipation unmanageable
-always inflated and filled with air
-dependent on me for the daily gestures: dressing, toilet, eating
– needs a wheelchair for his movements because more muscle tone … fatigue and pain
Chloe also has a profusion of more than 100 nevi Exereses have already been made on several because they were very suspicious fortunately they were benign. To this day she still has to undergo surgery of several nevi that seem very dangerous. My geneticist thinks that I also have another disease that would generate such a large profusion. Here you know the main lines. I just wanted to thank this group..this incredible parents and her little heroes who have become like a family..a landmark..a lighthouse that enlighten me.