JBADGIRL (from Postnatal oct 04 thread) son had died xxxxx

[Biglips]

he had a long illness from birth but sadly yesterday her son died yesterday as his heart had stopped

R.I.P. Toby xxx

[nell12]

Just seen this thread, as a mum of an Oct 04 baby and my own Toby, my heart goes out to you and your family. I hope things are being sorted out as you would have wished xx

[jbadgirl]

No news yet, still waiting for some results. Hoping they will come back this week as we really need to lay him to rest. Its been a whole month already and we have achieved nothing. They have said that the cause is natural but which natural they are finding out.

[jbadgirl]

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.

[Scootergrrrl]

Your bravery throughout this has been amazing and Toby looks like a gorgeous little boy. xx

[nailpolish]

im glad you have some answers
stay strong
np x

[jbadgirl]

Hi everyone, yesterday went really well, the service was lovely and made everyone smile. Thanks to the minister I am now commited to doing the 5 mile walk for snowdrop next year (he said it during the service). We were ok on the way to the crem but as soonj as we pullld in there was a huge queue of people wearing something yellow. How overwhelmed were we! What a fantastic send off for Tobs! He really did touch so many people (we estimated 150 people were there). Afterwards we went to a hall where there were so many sandwiches and other bits of food it was great. Not forgetting the alcohol that I started on straight away! I have given away food to family as there was loads left and still some in our fridge (the left over alcohol came home with us though!!!)

I have put a memory page for Toby on www.gonetoosoon.co.uk.

Hope everyone is doing well and those little ones that have started pre-schools this year. x