Hello, my name is Jenny and I am a mum to 9 month old Willow and we live in Thurrock in Essex (is there anyone nearby?????). Willow was born with choanal atresia, low muscle tone, a narrowing of her airway and quite bad feeding problems..................she is back to being NG tube fed although she tolerates solids but gags frequently and vomits.

I am writing this hoping someone can give me some advice on diagnosing Charge. we have recieved information from the genetics team saying that CHD7 testing is not available in the UK, however I have read different information saying that Great Ormond Street offers testing?????

Also, and more importantly I need help to encourage Willow to sleep. she wakes every night, crying in her sleep and we often cant wake her.....................we think this may be reflux (Great Ormond Street performed a sleep study and said her breathing pattern was normal), we don't get any sleep as a result and need some advice on how to combat this
Any help would be greatly appreciated.
Jenny