Thinking of you Jbadgirl. Hope it will be a lovely day for you to remember xxxxxxx
RIP Toby xxxx
this is the last post from Jbadgirl from the other thread
Hello, thought I would fill you in on our trip to southampton to see neurologist. Funnily enough our neuro knows the neuro pathologist in great ormond street and has found a diagnosis for Toby, which is also his cause of death. He had Aicardi-Goutieres syndrome which is a progrssive brain disorder. If you search it on the web there is more info on it. It is very rare (about 50 cases worldwide) everything about it relates to Toby and is so interesting. It is genetic so we will have to have genetic councilling and to find out the chances of future children having it. They think its a 1 in 4 chance each pregnancy. Our neuro has only seen one case before when she worked in great ormond street in 1990. We know this info before the coroner so still have to wait for him to get back to us about death certificate etc.