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It affects boys but girls can be carriers (It is thought that one in
20,000 boys is born with the genetic disorder). There are several forms
that ALD can take. The most devastating type, which Ollie had, is the
childhood cerebral form, meaning that nerves in the brain are destroyed.
About 35-40% of all cases of ALD are this type, which usually appears between 4
and 8 years of age in boys. These boys will become totally disabled in 6 months
to 2 years, and will die some time after.
ALD can also appear like Multiple Sclerosis, in that there is a gradual loss of
function in the body but without the severe brain damage of the cerebral type.
This second form is called adrenomyeloneuropathy (AMN), and represents about 40-45%
of all ALD cases, and affects men in their twenties or middle age.
The diagnosis was made when Ollie fell off the trampoline when aged 12 and had
concussion. He spent three nights in hospital. at the Queen's Medical Centre
in Nottingham. They ran tests and ALD was diagnosed. The family were told
the devastating news and realised very quickly that there is no known cure.
They have since pursued their own research and become very pro-active in
raising funds to support research into ALD. Other symptoms prior to this had
been Ollie's forgetfulness that seemed to cause enough concern that Gail had
been several times to discuss it with her GP.
Currently, they have been funding scientists to research the causes of AlD,
so that one day they may be able to find a cure. There is plenty still to do
and since Ollie has died they are planning to get more involved with raising
the profile of the disease and to raise funds for research through a charity.
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