Jacobs story - pre diagnosis...


This is a brief overview of Jacob pre diagnosis.... we believe he was born with it... but by the time it was picked up he was 9...

Jacob's story...



What we're doing...

Medical & Physio...

Alternative medicines...

Supplements...

Environmental...

School...

The team...

Events and timeline...

Forthcoming Events...

Diary/Timeline...

Picture gallery...

Events gallery...

Treatment gallery...

General gallery...


What is ALD?

ALD or adrenoleukodystrophy is one of a group of disorders/diseases called Leukodystrophies, in which the fatty covering of nerve fibres, the Myelin Sheath is progressively damaged because of a faulty gene. The X gene.
 
Without the Myelin Sheath the nerves don't work as they should... like live wires touching...
 
There is no known cure or treatment as such at present and the disease will continue to spread through the brain and the adrenal glands resulting in death.

Yes, this is a life threatening disease. The disease effects mostly boys and symptoms may not show up till the child is usually between 4-10 years old.  As we have found out by the time the symptoms really take hold it is usually to late for anything to be done.  There is a possibility of a bone marrow transplant... but the disease needs to be caught very early.  Which is hard to do as there are no tests done on kids to check, as this is a very rare disease.  Only 70 odd kids in the UK have this.  There is research going on but as yet nothing concrete.
 
So this was not good enough for us and we have done our own research and have a treatment programme for Jacob, you can find all the info on what we are doing within this website.
 
We were not prepared to either watch our son die before our eyes without doing something.  So we took the plunge and Jacob has had pioneering Stem Cell Treatment in Germany to hopefully save his life! along with all the other things we are doing. To find out more we have listed everything we are doing under the 'What we are doing' section! We hope with what we are doing we may at least slow this nasty disease right down or even stop it... who knows... but we have to try and we will continue to do so. Nothing is impossible... it just means nothing has been found... yet!  We hope with our story and what we are doing we may have found somethings that work!  The disease is scaled 1-30... 1 being great 30 being... well you can probably guess.  Jacob was scored on an 8.  So August 2009 pretty much a normal 9 year old... Oct 6th diagnosed and scored on an 8... thats how fast this disease works! As yet Jacob hasn't had another MRI scan, but will at somepoint and it will be interesting to see where we are on the scale after what we have been doing.  Going from wheelchair and housebound Nov 09 to back to school full time April 2010.  Yes still uses a wheelchair.... but not at school... something must be happening surely.
 
We are documenting Jacob's progress so we can see what improvements he is making... as you will see he is making loads of improvements... so his symptoms are getting better... not worse.
 
Who knows what the future holds... Jacob is the FIRST CHILD IN THE WORLD to have this form of Stem Cell Treatment... so we shall see... watch this space as they say!

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