Mona
07-27-2007, 12:49 AM
Hi,
I am Ramona (Mona) and my daughter Melissa was born in Aug. 04 via EXIT Procedure in Bonn/Germany, so she is trached since birth. She is diagnosed with Fraser Syndrome, a rare disease. She is blind, cannot speak and also has BAHA`s (bone-anchored-hearing-aids - but not implanted) because of an auditory canal atresia. She has Syndactily on both hands and feet and a little Omphalocele.
We are looking for methods to make possible that she can learn speaking and other parents/children with fetal CHAOS or laryngeal atresia.
And - me too, like Nellie ; sorry about my English ;) I hope we will be understand :)
Now this is my little wonder:
No. 1 (http://www.fruehchen-portal.de/load/video.html)
No. 2 (http://www.fruehchen-portal.de/load/video2.html)
No. 3 (http://www.fruehchen-portal.de/load/video3.html)
I am Ramona (Mona) and my daughter Melissa was born in Aug. 04 via EXIT Procedure in Bonn/Germany, so she is trached since birth. She is diagnosed with Fraser Syndrome, a rare disease. She is blind, cannot speak and also has BAHA`s (bone-anchored-hearing-aids - but not implanted) because of an auditory canal atresia. She has Syndactily on both hands and feet and a little Omphalocele.
We are looking for methods to make possible that she can learn speaking and other parents/children with fetal CHAOS or laryngeal atresia.
And - me too, like Nellie ; sorry about my English ;) I hope we will be understand :)
Now this is my little wonder:
No. 1 (http://www.fruehchen-portal.de/load/video.html)
No. 2 (http://www.fruehchen-portal.de/load/video2.html)
No. 3 (http://www.fruehchen-portal.de/load/video3.html)