Children who are not affected by the condition may also need support to cope with the changes to family life brought about by their family member’s diagnosis with leukodystrophy. Children without the condition may feel upset and scared at what is happening and what may happen. Alex TLC can provide support to help unaffected children, including directing families to specialist support to give a sense of normality to these children’s lives, including hospice support groups and connecting children in similar situations through our peer support network. See our How We Support You page for more details and to get in touch.
As these conditions are genetic, diagnosis of one member of the family will lead others to be tested for the condition – a genetic counsellor can organise this if it has not yet happened.