Leukodystrophy Resource and Research Organisation Inc. | Incorporated No. IA41033

Families

It can truly be said that Leukodystrophy is a “Family” disorder because it is inherited genetically and therefore involves the entire family; both immediate and extended. It has broad ramifications involving the current members who maybe still exposed to it as well as those who have not yet had children.

Inheritance of some of them is X-Linked (Mum carries the mutated gene on her X Chromosome) and others are Autosomal, which means that both Mum and Dad must have the mutation, which is on a non sex Chromosome (Autosome).

There are many matters that need consideration and some of them are Bone Marrow and Stem Cell Transplants where donors are needed; family planning for future children; Gene Therapy; Gene Testing and at what age should it be undertaken; family dynamics with a chid or adult with a life threatening illness and many other issues that arise within a Leukodystrophy Family.

We hope as you read the stories, watch the videos and link with other families that you will draw hope from their experiences and expand your family and personal support; albeit through an uninvited guest.