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/March 2014 - Apologies for not updating sooner! so much has been going on! Firstly and most importantly... Jake has had his MRI and Adrenal blood check... MRI is pretty much the same with a slight movement... and the consultant thinks the seizures are being caused by the ends of the nerves touching now and again... so he has starting some seizure pills which will dull the nerve endings... just started them actually... low level pills and minimal side effects... he has been on them nearly a week now and all OK so far! he has had 4 seizures in total since September and I HOPE we have seen the back of them! personally I also think, and so do my holistic team, that puberty is playing a big part as well... Jake is 14 now and a typical boy teen!!! and having the surges of testosterone which we think could be causing the seizures also... so hopefully we have things in place now to sort that! and my holistic team as ever are working hard to help Jake through puberty! and helping us as well! I was unsure re the pills as up till now everything we have done has been holistic not chemical ... BUT realising that sometimes the Western Doctor way does play its part! I think because there was no magic pill to help Jake we turned to the holistic way... so lets see how he gets on... So amazing news re the MRI and the Adrenal check and we are now 5 years in! thats the good news!

The badish news! been fighting to get the works done to the new bungalow through social services and its become a nightmare! I have had to get the local MP involved as was banging my head against a brick wall... was told when we moved in Sept approx 3 months (we have no equipment here and Jake is know 11.5 stone and 5 foot 8 roughly! and we cant even bath him now!)
anyway... due to getting the MP involved work starts here in 2 weeks ish!! have also been fighting for help with bathing etc! and again due the local MP have managed to arrange this via Jacob's school! If it wasn't for Jake's school I think I would have gone mad by now! Its bad enough dealing with his disability/work/my poor other son, who never gets a look in, let alone fighting for all we need and it isn't picky things it's essential things! Jake even had a seizure on the loo... I asked for help! was told NO! We have had to fight for everything! and it's not fair to us parents who are struggling as it is! and my next plan is to take this right to 10 Downing Street!! so I'll keep you posted on that!

The disability world is a hard world and coming from what I call a normalish life to this I still can't believe how horrendous it is! still 3 years later waiting for pull ups at night as well and still fund them myself as incontinence can't seem to help! Jake does wee a lot and always has... so I need heavy duty for him! he doesn't wear them during the day just at night as he is so heavy to keep lifting him out of bed every 5 mins! can they get them for me???? 3 years later still waiting to hear! so I got in touch a while ago with Incontenence Choice and they are great and have been helping me... so I have now asked for what I NEED, not what they are giving me! so we shall see! fight, fight, fight... thats ALL we seem to do! and its not on!

So I am hoping in the next few months the bungalow will be adapted, I will have the pull ups I need and we can get on with our lives! it will be nice for Jake to live in the WHOLE bungalow not half of it! as he can't access the other areas as waiting for doors to be widened etc! moan over!!! as ever if I can help with anything just drop me an email and will do my best - in this disability world you need all the help you can get!!!!

April/May/June 2014 - Well its been a good few months now since Jake has been on his seizure pills and so far so good!! No seizures! so hoping they have gone away!!! We had Jake's big yearly school review last week and he is making progress... maintaining in some areas and improving in others! and his teachers now think he has a chance of sitting his GCSE's! so we have been choosing his options and Jake is well up for it! FINALLY he is taking school work seriously - and has asked for homework!!!

And work starts on the bungalow on the 23rd June AT LAST!! Once the adaptations are done it will be so much easier!

A few more weeks then school holidays!!! time just flies! Due to Jake's seizures etc, we decided to take the car and tour a bit round Europe and end up in Holland! feel safe there! but jake is chomping at the bit to go abroad via a plane... to him unless you fly it isn't a holiday... but the seizures freaked me out and if he had one on a plane, etc etc! But we're a bit more used to it all now (hoping it wont happen again BUT I have to be realistic!) and because we are going back to good old Holland where we know people, it feels safe... but please God next year we will go somewhere on a plane! Not that he hasn't been on plane! but not for a while now anyway.

My youngest Sam starts senior school in Sept!! so gearing up for that! Both my boys not babies anymore (as I keep getting reminded) and the fact that both are now taller than me!

So at the mo all is good and will be even better when the bungalow is done! not looking forward to the dust as we have walls coming down etc... but will be great in the end.

July/August/September/October 2014 - I am so sorry havent the time to update the website!!! so much has been going on with the house renovations!!! FINALLY DONE!!! so much better for all of us! and can know bath my own son!!! hoorah!! the renovations have been going on from June till now! At last its all over .... now we can live properly! and no more screaming at the counci! I hope! this disability world is so disgusting! my local MP has been brilliant in helping us get what we need.... its a shame it has to be that way! one thing I have learnt through all of this is ... keep fighting and NEVER give up! and always try your local MP.
In the mix of all of this we went on hols to Holland and Belgium and had a lovely time .... Jake still doing well.... still no more seizures (fingers and toes always crossed!) so we can now get his electric wheelchair at home! a year and a half later! want to start standing him more and concentrate on his legs ... where he has got so tall etc he is now constantly hoisted so therefore not standing anymore and dont want his leg muscles fading away so have a plan! a chap at Jakes school used to train the para olympians so in the New Year going to get him over to do some leg training with Jake ...
Jake is doing well at school and 15 yrs old in Feb 2015! cant believe he is a man!!! struggling to deal with it sometimes ... as one minute im feeding him and the next minute talking about his future plans! ie moving out with his girlfriend! just try and take each day as it comes and see where he is at then! but he likes to wind me up about it all!
Sam my youngest (11) is now at Senior school .... doing well there ... but its hit him more about Jacob as he hears all the time what his friends and their brothers are doing ie going out etc and unless me or Martyn go Jake cant go for a bike ride with Sam for eg .... The school Sams at are really good and helping him work thro it ... now and again it hits Sam ... but Jake ... still a laugh a minute! never down or despressed .. sometimes gets frustrated ... but more with the speech .... hasn't deteriorated but still slow ... but he always finds a way to let you know what he wants ... and doesn't stop till you have got it!
So .... now gearing up for xmas! and rushing to sort that... as the house has sucked up so much time!
Again if you have any queries or questions please drop me an email ....
We have the consultant at end of December so we shall see what comes of that. so that leaves me to say .....
Happy Xmas to you all and a Happy New Year ...


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