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. 

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Jacob's 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... I want to just let you all know what Jacob was like before... as if I knew about this disease then I may have had him tested before.
 
Jacob was born 23rd Feb 2000.  He was born 6 weeks early by c-section as I had SPD... a pregnancy related illness.  He had problems feeding and was failing to thrive... tried breast feeding and that didnt work... so eventually got him taking the bottle and Jacob started putting weight on.  All normal... then 18 months old started showing signs of a squint... by the age of 2 the squint was quite bad so he had an eye operation.  Didnt work as well as expected so by the age of 4 another eye operation.  He was always a pickle... full of life and fun... always pushing the bounderies... was called into school quite a bit for low level behaviour issues... he had tests and assessments at school as they thought he may have ADHD... but nothing showed up. It was just Jacob... the class joker.  We even went on a Webster Stratton course which is designed to help parents understand and have stratagies to deal with kids with these quirks!  Was successful actually and we did pick up a few helpful tips.  Jacob in school work always did well... very bright... writing was always a bit on the messy side as he hated writing... but when we got a home tutor his writing improved amazingly.

Jacob was always a bit clumsy and wasnt the best with his co-ordination or his attention span, he was a great swimmer though and did Karate for 2 years as well as football.  He was always a very popular boy as he makes his mates laugh... always full of life/jokes and always upbeat. (considering what has happened he still is... and still has reams of kids around him wanting Jacob to make them laugh!). So the Infant years at school and beginning of Juniors was called in quite a bit... he started to do things, and when questioned couldn't say why he did it... but again... was it just Jacob??... so nothing major... not enough for me to be worried... Jacob was Jacob... clumsy, bit of a hand full, hated being told what to do, a mind of his own even at an early age, he spoke pretty well by the age of 18 months and never shut up! a born joker, loved having fun and always upbeat... he was always in line or above average with his school work... very bright and switched on.  So things were as normal as they are with 2 boys and Jacob's quirky nature, he had all his pre-school checks etc and nothing ever showed up.  Till Oct 6th 2009.  We will never forget that day as long as we live.  The day Jacob got diagnosed with ALD a life threatening disease.  Our son who was the life and soul of the party ending up a month later barely able to speak/eat/walk/sit...

...this is our story to save his life and bring back the old Jacob back to his full glory!

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