Jacobs story - pre diagnosis...


This is our son Jacob and our fight to save his life from a rare brain disease called ALD or Adrenoleukodystrophy. 

What is ALD?...



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...


Diary/Timeline so far...

>2009 >2010 >2011 >2012 >2013 >2014 >2015 >2016 >2017

June 2009 - holiday in Turkey... noticed Jacob was more clumsy than usual and a bit disorientated.  We were concerned... could he have dyspraxia? knew a bit about this and Jacob was showing signs... got back to UK end of June and made Dr's appt. Meanwhile got him on Eye Q tablets.

Sept 09 - unfortunately Jacobs Grandad died and Jacob was extremely close to Grandad Ray... he started having shakes and tremors... we thought it was due to his Grandfather passing away.

Oct 6th - diagnosed with ALD... waited 3 months for an appointment! by this time Jacob had problems walking... had severe shakes and tremors... co-ordination and balance problems. Called in David our healer. Started Wheatgrass, low fat diet, lorenzos oil, multivit.

Nov 09 - Walking got so bad he needed a wheelchair... his face and the right side of his body was like he had a stoke. Started going to school part time in nuture group, taken out of class as couldnt cope with it. His speech deteriorated to hardly could speak at all. Could no longer drink through a straw. Stopped reading/writing etc. Couldn't even hold up a cup to drink.

Dec 09 - Right hand clawed up completely, could barely eat/sit/walk/ talk dribbling all the time... very spaced out and extremly tired, stopped going to school. Researched and found the Xcell center and booked for Feb 2010. Had to feed Jacob as couldnt feed himself, had problems chewing so liquidised and chopped up food. Each meal would take approx 1hr. He became extremely introvert, barely functioning.

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