Linking People
There are many different types of Leukodystrophy. [see our section on Types of Leukodystrophy]
Linking up with a person or family with a similar condition so that you can share experiences and learnings is one of the benefits of being a member of the ALDS.
Of course, everyone’s needs are very different. Dependent on your
needs and circumstances, we may be able to link you to a family therapist
(free of charge) or we may link you to a person dealing with a similar
situation or a similar Leukodystrophy. Alternatively it may be appropriate
to link you to a helpful organisation such as: Genetic Services Network
of Victoria, Association for Families of Children with a Disability, Carers
Association, Very Special Kids (Victoria), Bear Cottage (NSW) and so on.
We’ll listen to you first to work out what you may need, then we’ll let you know of the possible options you can choose to follow.
Here are 2 brief stories to give you a glimpse into how talking to others can help when dealing with an unknown future or when you may be feeling alone:
Two adult Leukodystrophy suffers contacted us at the ALDS. Both were from different States in Australia, but they both had the same type of Leukodystrophy. After some brief formalities were conducted to allow us the necessary permission to pass on their contact information, they phoned each other and spoke at length. They feedback to us that they came away feeling ‘like brothers’ because their experiences were so closely shared and it was so meaningful to speak to someone who really understood. A simple act - a worthwhile outcome.
We also had a one of our member families’ mother make contact with us. She told us that her son was critically ill with a Leukodystrophy and she knew that he didn’t have very long to live. She asked us to link her with another mother who had faced this trauma and sadness. We linked her with a mother whose child had died of the same Leukodystrophy. They used email to contact each other and gave each other support by sharing their stories along with true empathy with each other. This contact helped prepare the mother for the future and it also helped the bereaved mother to share her experience by giving support to another person in a similar position.
While we have kept these stories anonymous, we do have a published book of stories available. The book is more detailed than these 2 snippets, and many have found the book to be comforting and useful. If you would like a copy, please feel free to contact us [find out how to Contact Us]
If you would like to be linked to another person or family, again feel free to contact us. Because of privacy we will need to get your permission to pass on your contact details, but that’s all it takes.
The ALDS also holds regular social events for affected families to meet each other in an environment where ‘people understand and know what it is like’. In the past two years these events have been held in Melbourne, Sydney, Brisbane and Adelaide