ALD Life is a charity set up by Sara Hunt, the mother of two boys affected by the rare, genetic terminal brain disorder, adrenoleukodystrophy (ALD). This affects apparently normal and healthy young boys between the ages of 4 and 10 stripping away all function within months.
Her eldest son, Alex, was 7 when diagnosed in 2001 and within months had lost the ability to walk, talk, see and eat. This devastating diagnosis effectively saved the life of his younger brother, Ayden, who had a bone marrow transplant in 2008 to prevent him from becoming like his brother. Sadly, this treatment is only available to those whose condition is diagnosed before symptoms become evident so could not be used for Alex. The family consider themselves extremely lucky that Alex is still with them today and has made it to his 17 year, as the life expectancy of boys with symptoms is usually limited to a year post diagnosis.
ALD Life was formed in 2004 to bring together affected families and individuals (ALD can also affect adults in the same way as young boys; in addition adult males and females can be affected by a lesser form of this disorder, AMN, causing physical disabilities). The charity organizes a yearly weekend get together in London for those affected across the country and worldwide to meet and share experiences which includes activities for the children and adults, and a chance to forget the day to day hardships of living with the disorder. The weekend also includes a medical conference which brings together scientists and researchers in the field who discuss new innovations and keep those affected up to date with research developments.
The charity also offers a comprehensive website www.aldlife.org, contact opportunities with others in similar circumstances, financial support for those going through bereavement and bone marrow transplant, grants for medical equipment and therapies outside the remit of the NHS, practical information, support and advice for those newly diagnosed and hopes to be able to make a larger contribution to research as the charity grows. In order to boost the charities fundraising capabilities, public awareness and cover administration costs ALD Life has also set up two charity shops in Penge and Sydenham.
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