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 >2018


April 2017 – January 2018

Apologies for not updating sooner! time just flies by! Happy New Year to you all.

Jakes had a great year seeing all his bands, and tipped it of with five finger death punch in December, have to say, they were amazing!

So this year, 2018! Jake wants to leave school! 18 years old in Feb and he has out grown school, he could stay till he is 19 but doesnt want to. He is looking at possibly doing some open university courses, looking into this with his carer at the mo, so we shall see. He still cant read letters/numbers or write, but can see TV, people, 3D basically. Looking into this further, we had tests done on Jake last year. His eyes are healthy, its the nerve damage from the eye to the brain thats causing the problem. Jakes carer is keen to do some more research for this and see if we can improve his vision. This has been the sticking point for Jake to take GCSE`s and this is where all the frustration lies, as he is all there in his head, and loves to learn, all be it subjects he is keen on. So looking into his vision issues and the possibility of open uni.

Saw Jakes consultant at the hospital and no deterioration at all, which is FAB news! 9 years in, the 2 lots of stem cell therapy, plus all the rest we do has DEFINITELY kept our son alive! cannot believe its been 9 years and he is on the verge of leaving school! so proud of my boy!

He is still going to the chiropractors and doing ok, plato`d a bit but anything is better than deterioration. Looking at re jigging the programme for him this year.

Planning all his gigs for this year to.. so far 3 days at download festival! Iron Maiden again, and more to come no doubt!

So, this year could be the year he leaves school! lots of research to do for him to make sure he can achieve what he wants to achieve.

Oh and one final thing ... looks like in April he will be swimming with sharks! another to tick of his wish list! possibly at London Sea Life, sorting this at the moment!

Jumped out a plane for his 16th and swimming with sharks for his 18th ... his 21st! ahhh who knows!

Watch this space!

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