My Son Joe - Adrenoleukodystrophy, ALD

Welcome to Joe's Website

This is a website dedicated to my little boy Joseph who sadly passed away in August 2003 from Adrenoleukodystrophy (ALD).

Joe whem he was 4 years old

A Brief Description about this site:

On this site I have written what happened to me & my little boy when he was diagnosed with ALD . It was the worst 8 months of my life but I wanted to share my experience's with everybody. The doctors told me he would have had it since he was two & he had the worst form of ALD. They also said they have learnt from Joe to help in their battle against this disease.

Please read my story & lets learn from each other on how to cope with this disease.......

Thank you for taking time to view my website.

Elle

LATEST UPDATES!: We have uploaded the photos from the ALD life weekend 2009, these can be found under our pictures........ Elle's Mum & dad have bought a bench in Joe's memory, please look under latest News for more details........

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What is ALD?

Adrenoleukodystrophy (ALD) is a rare, inherited metabolic disorder. In this disorder, the fatty covering (myelin sheath) of nerve fibres in the brain is lost, and the adrenal gland degenerates, usually leading to progressive neurological disability and death. A good portrayal of the effects of ALD on both the victim and family is the film “Lorenzo’s Oil”. It accurately describes the deterioration of a young boy with the disorder and resultant problems. The film does intimate that a cure (Lorenzo’s Oil) was found. Unfortunately this is not the case for those already with symptoms, although the oil is now a recognised and hopefully preventative treatment for all boys under 6 with the gene who are not presenting symptoms. It is now also being tested as a preventative treatment for men with adrenomyeloneuropathy (AMN) and females with symptoms.

Description thanks to ALD LIFE

Web address: www.aldlife.org

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