Hi
my name is michelle and i have a 11 month old cousin with charge syndrome. She has been in and out of hospital almost all of her life. She is fed with with a tube as she is unable to swallow. i would like to know more about your experience, and how your child has developed since. My cousin has such a great personality and she can do many things such as clapping her hands etc. A lot of the time my little cousins oxygen levels would go down, this is why she was sent to hospital a lot. Did your child have trouble with oxygen levels and did you find that this occured mainly at night.
please reply, it would be good to hear from someone who has experienced this before.