Mein Kind hatte eine Frontalnahtsynostose. Ich habe von dieser Organisation über Facebook gehört und ein package angefordert. Es waren tolle goodies drin. Ich fand es super, dass man mit dieser Krabkheit nicht alleib ist und so wussten wir immer, es sind noch andere betroffen und es gibt Menschen die uns unterstützen und an uns denken.
Wir haben nur durch Zufall raus gefunden, was unser Sohn hat. Die Kinderärztin hatte davon noch nie gehört. Leider kein Einzelfall in Deutschland.
Ihr seid toll, macht weiter so
My son was extremely late being diagnosed with a birth defect that should have been caught and surgically treated in infancy. As a result of it having been missed for almost 9 yrs my son has suffered many struggles from severe speech delay, language based learning disabilities, headaches by 8 yrs old and a serious academic regression at the start of grade three. Now suspected seizures. For yrs we suspected autism and had 3 psychological assessments done. He is nowhere on the spectrum. Almost 9 and still running for answers. Finally the scariest diagnosis. Skull reconstruction is the only thing to release the Internal pressure in his skull, hopefully releaving the pressure and stopping his debilitating headaches and allowing him for the first time, some quality of life.
This organization with their thoughtfulness and outreach of support at the scariest time of our lives, has helped make a scary and uncertain time, one that was a bit more uplifted with a light at the end of the tunnel.
There are no words to express the smile it brings to the face of a Mom facing such a difficult road ahead.
Cranio Care Bears, Thank You.
They have provided so much information that we need in a time that is very scary. Thank you Cranio Care Bears!
My granddaughter was diagnosed with metopic craniosynotosis when she was 10 months old. She had her operation just after her first birthday. The time in between and shortly after her surgery was very scary. We never knew about Cranio problems but we came across Cranio Care Bears when searching for answers. Not only are they educational but they send care packages that are crammed with items for baby and the parents. Cranio Care Bears is a Godsend to anyone with a family member facing Cranio surgery. They are angels in disguise.
Cranio Care Bears are an amazing organisation, helping families in need all around the world. They not only provide products for the child and parents but also assist families to understand what Craniosynostis is and how it can affect a child's health.
I cannot thank this organization enough! Everything in the care package was important to us during the surgery from the hat to the snacks to the CD of lullabies. i will be sure to support Cranio Care Bears in the future.
My little boy Roan was diganoised with craniosynostosis when he was six weeks old. I can honestly say it was the hardest time of my life and had no knowlodge of this condition. It was Cranio Care Bears and all the people on this site that help me in so many ways. I managed to make contact with alot of people in my area in Australia and even got to meet up with them and share there stories over coffee. CCB educated me on craniosynostosis and answered every question I had. Even advised me on what to bring to the hospital etc. I also recieved a lovely care package the week before Roans surgery which brightend up my day. I got through this tough time in my life and we are now on the other side and I am prepared to help anyone who needs me now. Cranio Care Bears is a fantastic website and needs to get all the exposure it deserves. Many thanks to all involved.