Please be assured you are not alone. We are here from the beginning and we know how it feels to receive this diagnosis. As well as direct support from the Family Support Team we can also put you in contact with other families in your area so that you can meet or have a chat with them. When you are ready please get in touch with us.
If you would like one of the Family Support Team members to get in contact with you please complete our contact form and submit it to us.
If you are a health care or medical professional this paper by Dr Jeff Neul gives a lot more detailed information that you may find useful.