Hi, my name is Sara Hunt and both my children have adrenoleukodystrophy (ALD). Through discussion with many people affected by ALD it was clear that there was a real lack of practical support and advice and so I decided to form ALD Life. ALD Life became a registered charity in September 2004.

My first objective is to make as much advice and information about adrenoleukodystrophy in all its forms readily available to anyone, medical or personal, and to offer support to affected families. I felt that the best way to do this was to develop a website where we can post our individual experiences with ALD and AMN (adrenomyeloneuropathy). On this website you will find practical advice, latest research news and downloads of medical papers, a page to tell your own story, a place to contact and speak to others, what fundraising is going on and a chance to advertise your own event, plus useful links to other sites.

My second objective is to raise as much money as possible. All research into the condition is charity or private funded so fundraising is a very important part of this site. We also felt that we should help the hospices that assist affected families as these are a much needed lifeline. As Alex has now stabilised I have found that alternative therapy has been a great help to him but expensive, so thought we should make grants available to families who wished to pursue alternative therapies. We will split any funds raised between these.

In order for this site to work we will need anyone who can to furnish us with their own experiences and advice. The only people that really understand what it is like to live with this disorder are other people going through it. Please go to the contact page to submit your experiences and advice. Please also let me know what you think of this site – your feedback is invaluable.

With this site I hope we have found a way to bring us all together to mutually help and advise each other.

More about me:

I am a single parent with two sons who both have Adrenoleukodystrophy. My eldest, Alex, was born in 1993 and was diagnosed in January 2001, aged 7. He is now completely dependent, but stable, and you can read more about his story here. My younger son, Ayden, was born 2000 and is the life of our house! He takes Lorenzo’s Oil, the low fat diet and steroid treatment. I have lived through the hell that is diagnosis, the torture of watching a healthy, normal son lose his functions, and the day-to-day hardship of coping with a child with profound and multiple disabilities, not to mention Ayden and the difficulties he may face for the future. I am fortunate in that Alex’s condition appears to have stabilised and so we have been able to experiment with various treatments, equipment and activities. I hope our experiences will be of help to others.