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

February 2018 - June 2018

Please tell me where the times goes! sorry not updated sooner!

Well, Feb marked Jakes 18th birthday! and had a fab time, went to pub, where else! and met up with all his chiropractors that all flew back for his birthday, from Finland and Norway! as they had completed their chiropractic courses at the college and all went home... but flew back for Jake's 18th... And in April he went to Thorpe Park again! for 2 days this time... and yep! he swam with sharks! He did this at the Blue Planet Aquarium in Cheshire!

Was amazing! the staff were so lovely, treated Jake like a VIP! spent the whole day there. He started in the training tank getting used to the scuba kit, and then went into the aquarium. Pictures are in the General gallery section. Im still waiting for the actual video as they video'd it for us, so haven't any pics of him actually under water. The largest shark they have is 14 foot long... a great place!

Then last week he did his 3 days at download festival! again pics in general gallery! had an awesome time.

Next is Iron Maiden, then Blackberry smoke, then Xmas time Black stone Cherry.

He is now going to the gym and working on his upper body strength, and still going to the Chiropractic college.

Met with new consultant recently who is a neurologist, and he is looking into anymore physio etc that might help Jake.

Id say over all, no deterioration, but staying the same, so we are upping the ante with the gym now to see if we can get some more improvement.

Recently we had Ted start working with Jake, and Ted is doing a Personal Training course, and Ted is the brother of Sophie who is Jakes other carer, so we have brother and sister team now working with Jake which is working really well. Both young so he sees them as his mates, which works better with Jake, as hates being nagged! and they take him to all the gigs etc...

Now Jake is planning his 21st! changes from Los Vegas to touring USA and all the theme parks!!! yuk! so we shall see!

So Jake now planning the summer hols, as thats nearly upon us.

As always if you do have any questions or want to no something please just drop me an email.

Watch this space!


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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