Losing a loved one to a leukodystrophy has a devastating impact on the whole family. Bereavement services can help all family members with next steps, including funeral arrangements and grief counselling. Alex TLC can help with this, either by helping you to find relevant services or providing a listening ear; particularly valuable if you have been receiving support from us throughout your loved one’s condition and feel a need to talk to someone who understands your pain.

Hospices also provide bereavement services; you can contact your local hospice even if your loved one did not have a connection to the hospice. National organisations which provide this when a child has passed away or is coping with bereavement include Together for Short Lives and Child Bereavement UK. Cruse Bereavement Care offer support to children, young people and adults when someone dies.