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 leukodystrophy. Children without the condition may feel upset and scared at what is happening and what may happen. The additional caring responsibilities faced by their parents may leave the child feeling left out and can cause jealousy. 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.
These children and young people may take on more caring responsibilities, either for younger children while parents care for an affected family member, or for the affected family member themselves. While they may seem willing and able to provide invaluable help in this way, it is important to make sure young carers are properly supported. Local young carers’ organisations can help with this, and you can talk to Alex TLC about how to make things easier for the whole family.
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. Those who discover they also have the condition, particularly young children, may find it difficult to cope with the fear that they will face the same deterioration as their family member. For most of these conditions, there is no treatment even at this early stage. See our preventative treatment page for further information. Alex TLC can provide support and advice to help those who have been diagnosed before symptoms begin, see Contact Us.