Thanks for visiting my ALD page!!
What is ALD?
It stands for "Adrenoleukodystrophy"- which is a lot to say, but also a lot to deal with if you or a member of your family has this rare disease. It's also a lot to type, so I hope you don't mind if I stay with ALD.
ALD is very rare- about 1 in 100,000 boys have it, including my son Harry. Many boys, including Harry also have "Addisons" disease to accompany the ALD.
ALD is a genetic disorder, (x-linked ALD) boys develop the disease, girls are the carriers and pass on a defective gene to their male offspring. It presents in a variety of different ways- making it extremely difficult to treat. There is no cure. The disease attacks the myelin coating of nerve cells, including those in the brain. This leads to severe mental and physical impairment- and even death.
My son was diagnosed 12 years ago when he was 5- he fell ill several times due to his Addisons disease. Addison's is fairly straightforward to treat compared to ALD - effective treatments are available enabling sufferers to lead reasonably normal lives. The Doctors at Gt Ormond however carried out further tests and found he had very early onset of ALD.
Very few of the effects had become apparent, and Harry was fortunate to be offered the only known effective treatment- a Bone marrow transplant. This was a long, aggressive and invasive procedure, carried out far from home at Bristol Children's hospital.
To see him now, he appears a perfectly healthy 17 year old with healthy interests in music and girls!
However, I often look back on the "dark" days when he was younger- a completely different outcome was far more likely. I also often think of the many boys and their families we met along the way who have not been so lucky- and have gone on to develop ALD.
Boys who have developed ALD need full time care and support. They are unable to do anything for themselves, placing great demands on their families and carers. Organisations such as ALD life give these families hope, and support in these times of greatest need.
ALD is a very rare disease, and receives little attention. It was briefly in the news, when the parents of a boy with ALD, Lorenzo Odone, developed "Lorenzo's oil" in an attempt to find a cure. Although Lorenzo's oil does not cure ALD, it is thought to slow down progression of the disease in young boys who have yet to present with symptoms.
Boys who have developed ALD need all the help we can give them- as do their families.
For more information, please visit the ALD life website at www.aldlife.org/
Running a marathon is a small thing next to the trials of a boy with ALD. However I hope you will sponsor me so together we can provide some help and comfort to boys, and their families with this terrible disease.
(Now the small print....)
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On behalf of everyone who your donation helps- thankyou.