Well I did it! thanks to all of you for sponsoring me and all your kind words of support. It was a bit hotter than I would have liked and I was a bit slower than I wanted to be but the crowd and my supporters kept me going. Boy was I glad to see that finish! Home now for an ice bath and some stretching ... oh and a nice cold bottle of Peroni! 4.44.01 ... will it be the last time ... I doubt it xxx ;-)

19 miles completed today. A bit tough but my lovely husband Martin got me through! Only one more long run to nail and I'm on the home straight! Thanks for all your generosity so far xxx

Thanks for taking the time to visit my JustGiving page.

Until a few months ago I had never even heard of Adrenoleukodystrophy, but my friend and work colleague, Lisa, has two boys who have this disorder.  After deliberating for months about which charity to run for, hearing from Lisa what her family and especially her boys have been through and are still going through, I decided that this charity, which Lisa has special links to, should be the one that I run for. I hope you’ll agree and support me.

So what is ALD?

Adrenoleukodystrophy (ALD) is a rare and cruel, genetic, terminal disease which affects the brain, central nervous system and adrenal glands in normal, healthy boys aged between 4 and 10.

Some of the very early symptoms include abnormal or uncharacteristic behaviour, co-ordination problems, and a decline in school performance. This normally quickly progresses to a deterioration in speech, hearing, sight, swallowing and mobility and can lead to dementia within months of the initial symptoms.  It can go undetected for years within families and is very unpredictable. The affected child will eventually become completely dependent and unless treated successfully, will often die within one to ten years of being diagnosed.

Lorenzo’s Oil (the subject of the film with the same name) combined with a very low fat diet can help to prevent the onset of ALD or slow it down in those who have not yet developed symptoms, but the only way to completely halt the disorder is a bone marrow transplant and the total recovery period is about two years.  Of course a suitable donor has to be found for this to work and the treatment is not always successful.  Sometimes the disease spreads so quickly and the diagnosis is so late that there is no chance of a bone marrow transplant, leaving those affected to suffer ALD at its worst.

To find out more about ALD have a look at the charity website www.aldlife.org.

About Lisa and her family

Lisa is a Witney-ite like me and married to Simon.  They have three boys - Nathan, Ryan and Rhys.  Nathan was diagnosed with ALD at the age of 5 and Rhys at just 18 months old. 

In Lisa's case, she found out after Nathan was diagnosed that she is the healthy carrier of the defective gene that causes this disease and that each of her sons had a 50% chance of developing ALD.

Nathan had a bone marrow transplant at Great Ormond Street Hospital in December 2000 and his little brother, Ryan, at the time just 4 years old, was the donor.  The transplant involved very strong chemotherapy which wiped out all of Nathan’s own bone marrow in preparation for Ryan’s donor cells. During this period due to Nathan’s immune system being weakened by the chemo, he was at high risk of infection so he had a long stay in hospital in isolation with only Lisa and Simon able to enter his room until has immune system was in a more stable state. Five years later, Rhys also went through the same procedure, but from an unrelated donor.

Things are hopeful for Lisa’s boys. Nathan is nearly 19 and is at a university in Lincoln studying Pyschology and Education Studies. – an achievement that Lisa and her family are extremely proud of.  Rhys is 15 and is a talented musician, his ambition is to become a music teacher, so he’s working very hard at his GCSE’s at the moment. Ryan, the lifesaver(!) is currently learning to drive and will be celebrating his 18th birthday this year with his brothers, a day Lisa and Simon years ago could only hope to see.

However, both Nathan and Rhys still have to attend regular appointments at Great Ormond Street Hospital for MRI scans and various other tests to check that there is no deterioration in their condition.  They are also both life dependent on steroid replacement therapy.

In Lisa's own words, living with ALD is like a rollercoaster ride with many uncertainties and worries occuring on a daily basis.

And a little bit about me …

This will be the third time I’ve run the London Marathon and I can say that the training doesn’t get any easier, especially as 9 years have passed since I last did anything like this! 

Hearing about what Lisa’s boys have been through over the years makes me realize how lucky I am to be able to (hopefully) run 26.2 miles on 13 April this year.  They inspire and motivate me to keep getting up in the dark, cold and wet to do those long runs when most of the rest of the country is lying in bed - so that on the day, I can say I’ve done as much as I can to run well.  So, I’ll carry on with the hard work and in return I wonder if you’d be generous enough to give a donation to this very small but very worthwhile charity to help children and families like Lisa and her boys.  Thank you. x

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.