Thank you it is good to hear there are others. To our knowledge H is the only child in the uk with it. She has had it for 5 years starting with severe symptoms of anaemia and progressing to acute sudden bout of vomiting violently with severe blood loss every 9-12 months. Luckily she is pretty stable now but it would be lovely to hear that hopefully she will grow out it maybe fingers crossed. So little is known about it here. A