Story

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.

 Harry came through and it would seem the treatment has arrested the progression of ALD.

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....)

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 and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

On behalf of everyone who your donation helps- thankyou.

Raising money for

ALD Life

ALD Life

Charity Registration No. 1106008

ALD Life is a patient support group for patients and families affected by Adrenoleukodystrophy (ALD) - a rare genetic disorder that affects mainly young boys aged 4 to 10. At present, there isn't cure for ALD and death usually occurs within a few years. Help us today to give hope for tomorrow.

Donations 18

Donation by Jackie Collins on 28/10/11

£10.00

+ £2.50 Gift Aid

Thanks again D&D, and Bullet.

Donation by Simon Cass on 25/10/11

£17.50

+ £4.38 Gift Aid

Well done simon a very worthwhile charity,we are pleased to support you.

Donation by Sue Biggs on 16/10/11

£100.00

+ £25.00 Gift Aid

2 very worthy causes, so much so decided I had to sponser you for both! Wishing you lots of luck, although suspect you won't need it!

Donation by Jane Moor on 08/10/11

£10.00

+ £2.50 Gift Aid

All the best!

Donation by Isabel Abreu on 08/10/11

hi simon , sending you all our best wishes , hope all goes well, x

Donation by teresa cole on 07/10/11

£10.00

+ £2.50 Gift Aid

good luck

Donation by chris edwards on 07/10/11

£10.00

+ £2.50 Gift Aid

Hope it goes well.

Donation by Annie Moreton on 07/10/11

£10.00

+ £2.50 Gift Aid

You'll be running I'll be pushing!

Donation by Susanna Cass on 07/10/11

£10.00

Best of luck

Donation by Wil Beedle on 07/10/11

£50.00

+ £12.50 Gift Aid

Well done Simon, all your hard training for a worthy cause, good luck. Dad and I are very proud of you

Donation by HEATHER CASS on 07/10/11

£20.00

Faster! Faster! Faster!

Donation by Stuart Cass on 06/10/11

£100.00

+ £25.00 Gift Aid

Good luck Simon John and I will be cheering for you.

Donation by Judith Reynolds on 04/10/11

Good luck Simon, a worthy cause !

Donation by Tony Medd on 03/10/11

£10.00

+ £2.50 Gift Aid

Good Luck!

Donation by Cate Gordon Green on 29/09/11

£20.00

+ £5.00 Gift Aid

Good luck, and best wishes on your effort for a very worthy cause.

Donation by steven wilson "Tug" on 15/09/11

£10.00

+ £2.50 Gift Aid

Good luck, all for a good cause!

Donation by Leanne Hayley on 14/09/11

£5.00

+ £1.25 Gift Aid

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Having 2 children myself i feel that donating to this charity is very important and will make a difference, Good Luck ;-)

Donation by Zoe Perrin on 02/09/11

Donation summary

  • * Online donations£437.50
  • Offline donations£0.00
  • Text donations£0.00
  • Total raised£437.50
  • Gift Aid£96.88

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