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A New Page (What is ALD?) has been added with medical definitions of ALD, this can be found under the Information Section.

Another New page has been added called Donate, which is found under the Donate section. If you can afford please donate to the ALD Life Charity.

We have uploaded some photos of Joe, which can found under the Pictures section.

To bookmark Our Site, click on the button below.




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You can contact me by email, please click the button below to do so.

Email Me

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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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No of Visits

Welcome to Joes website...

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

Joe when he was 4 years old

A Brief Description about this site:

On this site I have wrote 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.......

Read My Story

Please help us raise money for ALD Life. We have set ourseleves a £1000 target, so please donate if you can afford. Click below to go to the donation Page.

Please Donate

We have up a guest book so you can leave comments and we have received lots of wonderful ones.  Please can you take time to sign our guest book,  It is really nice to see any feedback no matter how short it is. 

To sign or view our guestbook, please click on the link below .

Guestbook

 

Thank you for taking time to view my website.

Elle