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

January/February 2013 - Well Jacob is still continuing to surprise us all and doing so well!

At the end of December his school had a presentation assembly where they give out certificates on what the children have achieved. Jacob got awarded the certificate for the most improved child!! they told me he isn't maintaining anymore - he is improving! which was the best Xmas pressie I could have asked for! he is still so full of life and now doing athletics Monday night after school - and youth club on a Friday after school! he is loving it! he is into body building now as well as he wants to build his upper body strength so that he can help himself a bit more!

This has come as he has now joined the teenager gang! he was 13 on the 23rd Feb and reminds me everyday he is a teen!! and he is as big as one also - seems everyday he is growing!

On the gallery page I have put the certificate that he got and also some new pics of him.

Victoria school is such an amazing school, he does physio practically everyday... from swimming in the hydro pool, to walking, gym etc... also in the school holidays they run a club called Adventure days and he loves that... being with his mates and having fun.

Jacob is still continuing, and always will have treatments from Linda who does the radionics and Dr Pearlman who is the holistic chiropractor, plus all the supplements we give him and he's still on a restricted diet... with, of course, the odd treat here and there... Jacob himself has got used to healthy eating now - he rarely asks for sweets/cakes etc... in fact he was the only kid at his party who didn't have birthday cake!

In April Jake has his 4th MRI so we shall see how that goes... and hope that we have still managed to stop this disease from spreading.

Will, as always, keep you posted... but in the meantime, if you need any help/advise or have questions please email me from Jake's contact us web page.

March/April 2013 - Well Jacob decided he DIDN'T want an MRI! he doesnt like the injection part with the dye... soooo... I decided that on this occasion, as he has been through so much without a moan and a groan, that I would do what he wanted! However we have re-scheduled for OCT.

He is still doing really well, maintaining and very into his body building! he is 9.5 stone and 5ft 7 now! so getting very heavy and he wants to be able to transfer himself... as he is now a teen he is striving for his independence! we have been looking for a year to move to a bungelow so I can get the equipment I need ie hoists etc... we live in a three story town house... so isn't really suitable for Jake... anyway... house has been on the market for a year... and nothing! So we have decided to get an extension built! then boom! get an offer on the house! only prob is there isn't any suitable bungelows in our area... so going with the extension idea... which will make life a lot easier.

Also managed with the fundraising we did and a huge help from Caudwell Children who donated £18,000 to be able to get Jake the electric wheelchair he needs, which also lifts to a standing position! so should have that in a few weeks! Caudwells help with the "big part of the money!" for specialist equipment you can't get through Social Services... (well what can you get through them anyway!!) so once we have the chair I'll post some pics for you to see... this chair lifts to a standing position... to help with Jake's circualtion/posture etc...

Did another trip to the 02 a few weeks ago for the kids to see WWE which they love! also got in touch with Starlight who are seeing if they can arrange for them to MEET the WWE wrestlers in November when they come back to the 02... this is Jake's lifelong dream and will be amazing if it can happen!

So... thats about it for now! Jake doing well... Monday nights after school he does athletics and Friday after school youthclub... and when he gets his electric chair he wants to do wheelchair footy on a Tuesday! he has a better social life than all of us!!!

May/June/July 2013

I am so sorry as I haven't updated Jacob's website in ages... the days and months seem to roll into one!!!

Slight change to the previous update - the extention idea ended up being so expensive! and then all of a sudden we sold our house and bought a bungalow in the last few months!!! so been a bit manic with that! AT LAST... the bungalow is still in our area which is what I wanted and also will be so much better for Jacob... so at last I can have all the equipment I need!!! yipeeee...
Moving in a few weeks!!! ahhhhh so getting ready for that!

While that's been going on we have been sorting the delivery for Jacob's new electric supa dupa £23,000 wheelchair and its arrived!!! see pics in the treatment gallery!!! its amazing!!! as you will see from the pics it goes to a stand position so we can maintain Jacob's circulation etc much better and also he can stand!!! and we haven't got to hold him to do this! as he isn't small anymore!!! it's an amazing piece of kit!!! and today Permobil fitted the joystick... and Jake was off!!! took to it straight away!!! Victoria school are going to be training Jake in it and he will have to have a driving licence!!! we didn't know whether he would be able to do this or not and he did!!!! he had the biggest smile ever and now hopefully he can have some of his independence back... which at 13 years of age he so desperately wanted!!! So so proud of my boy and the way he pushes himself to achieve what he wants!!! well done Jacob!!!

Permobil are the company that make this wheelchair and Caudwell are the charity who helped us raise the rest of the money... www.caudwellchildren.com they also help with all other equipment as well and are amazing! my contact there is Tiffany and she has been amazing! so amazing in fact that I am helping to raise some much needed funds for them. Permobil... the chaps name is Andy www.permobil.com and again such a fab company... if you would like any more advice about these two amazing companies/charity just drop me an email and I can fill you in!

Jacob has his school sports day the other day! and his team WON! it was an amazing day... popped some pics in the general gallery! Sam (our other son) took the day of school to come and help out and he was blown away at the effort that Victoria school put in!!! it was like a day out!!!

Jacob still continues to thrive and can't wait for us to move so he can have the run of the place and life is going to be soooo much easier I can't wait!!!!

So will do my best to keep you all posted... so if I'm a bit slow updating the website and answering emails you know why!!! but will do my best!!!

I hope you all have an amazing summer and enjoy this lush weather!!! Jacob certainly is... any chance of a sunbathe and he is out there!!!

So hopefully my next update will be from our new home!!!

Over and out for now!!!

August/September/October 2013

Well summer has come and gone in the whirlwind of moving... AT LAST we have moved to a bungalow and so much easier already... got doors being widened and hoists etc to be installed with a wet room etc and when all done will be so much easier... kids love the bungalow and not far from Sam's school so he can now walk and is feeling and acting very grown up at 10! Jacob 13 going on 18 is looking forward to Xmas here and already giving me lists!

We had a worrying time over the move as Jake decided to have a seizure the night before we moved... couldn't stop the move so had to get on with it... so organised it by the hospital bedside... Jake came out of the seizure after 24 hours as if nothing was wrong... scared the life out of us... as he has never had one before... but has bounced back and no lasting damage done! so bit on tenterhooks as to why it happened etc... Jake was supposed to have his MRI on the 23rd October but had to cancel due to a stinking cold... so waiting for new appointment... hoping that it doesn't show up anything and that the disease still hasn't spread... I generally go by Jake's well-being and it seems nothing has been effected by the seizure... but until the MRI tells me that I won't rest on my laurels yet! However ALL my holistic team seem to think that it was all the excitement of moving, as Jake has been so excited about it... and also Jake has been pushing himself really hard in the gym and with all his physio... he basically wont stop! and I think he's just over done it! So we have had to tell him.

Kids don't know it yet but through Starlight I have organised the biggest wish my kids could ever ask... and that's to meet the WWE wrestlers as they are both still hardcore fans! Saturday 9th Nov 2013... cannot wait to see their faces... its taken me 3 years to find someone who could help with this wish and it's happening... thanks to starlight! So will update you all on how that goes soon.

Jake's new wheelchair is proving a great success... and once the doors have been widened etc we can at last have it at home...

Not much to report other than the move etc... and getting the bungalow ready for Xmas! which is creeping up already!

As always if I can help with anything please drop me an email...


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