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


July/August/September 2016

Well summer has been and gone and we managed another Thorpe Park trip! unfortunately Avon Tyrell didn't come off.

Been researching, like I do, about food and diets and came across this Lady in USA who has cured herself from progressive MS through food, she happens to be a Doctor too! absolutely amazing what she has achieved. Her name is Terry Wahls and she has adapted the Paleo diet,basically the cave-man diet – fruit, nuts, seeds, veg, meat. She has a book which I grabbed on Amazon and just before the school holidays we all started this diet! she has also done lectures on TED, you can google You Tube, put her name in and watch… truly incredible! She has got herself out of her wheelchair and now cycling 18 miles a day! all through food and exercise!

Jake has lost weight and is definitely making improvements, from the food as well as physically, and also this has been through chiropractic rehab! let me explain – I go to AECC Chiropractic clinic in Boscombe, its the best chiropractic college worldwide where they train interns from all over the world. I have been going there for years, in fact when I was pregnant with Jake I came across it as I had SPD – a related pregnancy condition – and they were amazing as up till that point physios etc couldn't help and I was actually in a wheelchair as couldn't walk... they got me out of that chair, and when I fell pregnant with Sam I had SPD again, but this time I was down the gym at 38 weeks pregnant! anyway I have been going on and off there for years with my back as well as prior to getting equipment ie hoists/stairlifts I was lifting Jake everywhere and, as you all know from reading Jake's website, it took a long time to get equipment – the college have kept me going!

Anyway .. since Jake has got bigger and health and safety in this country, and Jake's school who are very health and safety conscience, which I do understand, they have to not cause risks to themselves as he does weigh 13 stone!  he isn't doing as much, if any, walking in physio and his right leg muscle is starting to waste away... been looking for years to find a similar place like we went to in Germany ISST who did the rehab physio for Jake after his stem cell treatment! Well, thanks to the wonderful chiropractic college, I have found that place! and only 5 mins away from where we live! I had a chat to Sam my intern there about Jake and they were willing to see him to see what they could do. We met with the tutors also about Jake as they hadn't dealt with anyone let alone a teen with Jakes condition before. As this last year Jake has turned 16 and like I said has got bigger, it's hard for the school to do these things, plus as you will see in the pics Jake has a team of 5/6 people at the college, whereas at school it is one or two.

So since July Jake has been going once a week for chiropractic treatment (sitting in a wheelchair all day is so not good!) so he has an hour treatment and an hour rehab every week. Rehab is exercises... but to specific muscle groups. They have a specialised gym onsite. Put it this way, when Jake first went he couldn't actually stand himself, even pulling up from bars... he is now starting to grab onto these bars and pulling himself up! their hope is by xmas he will be able to walk a few steps! his standing has improved ten fold, his posture is so much better, his muscles are more relaxed and not so taught. His overall wellbeing is on the up! They have written a specific programme for him, like they do with all there patients, and are also underway with a case study as well! Jake loves going too, which helps! and he gets a real buzz as he can see the improvements he is making!

For more info on this and pics of what he is doing please look under medical and physio/team and also treatment gallery, you will see him in action and meet the team! so yep Jake's team has grown more! We are so blessed by all these people helping us with this! and without them all God knows how Jake would be! it's truly amazing how far he has already come in such a short space of time! I'll be taking pics and videos documenting his progress as well. Videos will be loaded on soon!

So watch this space and lets see if they can get him walking a few steps by xmas!!!!!

On the links page I have put a link to Terry Wahls website and the chiropractic college too, and if you would like any more info please email me.


April/May/June 2016

Well, had a crazy few months after Jake did his skydive! Jake raised over £2000 for his school and has media attention ever since! been in the Echo a few times about it... and a few mags... and now, due to the jump I'm "hopefully" writing a book all about our fight to save Jacob's life as well as fighting for help that we need for Jake through social services etc, and how bad this disability word is! not that I'm saying its bad in all areas, but in our area of Bournemouth it is terrible.

Throughout the website I have said how bad it is not having much help, and all the fighting and battling we have had to do to get this bungalow renovated for him after being told we had to move due to our old house not being suitable, as well as the strain it has had on the family... well... this book is all about that... and to give people hope and to keep fighting and never give up!
Due to my constant fighting and never giving up after 7 years I have FINALLY got awarded more help! So now we have two carers that come and help us... and what a difference this has made to all our lives! This was through CHC funding... continuing health care... not easy to get, but due to Jake's condition we got it! finally someone helped us... as social services did NOTHING! and after loads of emails/complaint letters etc... NOTHING! and then recently we found out that the social worker who we had has since left, left all my paperwork on his desk and did NOTHING! get the jist! social services were negligent in how they have been... leaving me to deal with a 14 stone... 16 year old on my own most of the time .. as Martyn, being a plumber, works all hours... and they just don't care! so the book... IF it comes about is the whole 7 year story and how it has been for us.

If you would like more info on this CHC funding please email me and I'll fill you in! and also how to fight etc... as no one should be left like we have been. AHHH makes me sooooo angry!

So Jakes team has expanded! Lauren and AJ who have worked with Jake at Victoria school are now on board, and what a difference it has made... Jake is now out and about with them, being 16 he doesn't want to be with his parents all the time anymore, so now he has some freedom and independence... and comes home one day with dyed red hair and an eyebrow piercing!!! Experimenting like he would be without my say so!! but at 16 that's what teens do!!! .. its very hard for me as a mother as the things he wants to do I'm not keen on! but Jake being Jake doesn't care about that and pushes the boundaries .. constantly! experimenting and creating his own individuality! you can see some pics of his new look on the general gallery!
I have got used to the new look now! but school aren't so keen! which, of course, Jake is loving! so he may have to dye it another colour - we shall see!

So now "Team Jake" is in place we are planning all sorts of adventures! Jake is hopefully going to Avon Tyrell in the summer with the girls for a weekend.. without me! its an adventure place in the  New Forest, totally set up for disabled people, they do wall climbing, tree climbing, kayaking, archery etc etc... and ALL done in their wheelchairs! looks amazing... planning another Thorpe Park trip ofcourse! and Jake's new daredevil adventure idea... he wants to swim with sharks!!! so looking into that too! havent said yes yet though! just looking! although Jake apparently is doing it whatever! car racing, zip wire, bungee! (I'm not keen on bungee AT ALL!) due to AJ being Miss fitness and a nutter who is well up for any challange I'm not gonna have much choice me thinks! but sooo pleased for Jake to finally have the independence and fun he needs and deserves after what life has thrown at him!  and two great girls helping him achieve this!

So bring on the next adventure! if you can top the skydive!

March 2016 - "Jake's Jump"

HE DID THE JUMP!!!!! OMG was so amazing! the day was amazing, incredible!  ... Goskydive were amazing with him and looked after him the whole time! We had about 40 people come to watch including a minibus of disabled kids (jake's mates) from his school! The support was overwelming! It nearly didn't happen though! Had a call on Thurs night saying that the weather was bad for Saturday so could we come tomorrow (ie the Friday!) ahhhh... so behind the scenes I'm texting and phoning everyone to rearrange the whole event! But we did it!

Then when we got there they asked me why was I there! as apparently they had texted me to say that the day (Friday) was perfect, but not enough wind, and they needed some wind for his landing... Jake's right leg is very stiff, and on landing you need to bring your legs up, which he can't do! and the wind would have helped. So when they told me this, I checked my mobile... no message! they had texted my office phone by mistake! and I was so busy getting Jake sorted in the morning that I didn't hear it!!!!! so when I went into the office to say 'we are here'.. I nearly cried! well I may have done ... its all such a blur as I was so hyped up! Henk, who was doing the jump with him, and also the chap we saw for Jake's assessment (the lead guy) and Laura who had booked us in and was managing the booking  looked at me and said... we have to do this don't we! I looked out the window at everyone... including Jake... all so excited and said YES PLEASE... as long as he is safe!

Henk ran off to organise! I didnt really know what he was organising till I saw the video! its how they caught him on landing! you HAVE to watch!

Go to you tube and search: Jacob Whitehouse skydive... and you will see for yourselves HOW AMAZING Henk and his crew were!

When I saw that Video I was in floods of tears with it all! seeing my 16 year old son - with a brain disease - jump from a plane! and the grin he did just before he left the plane, to watching Henk with him the whole time, and then the guys catching him on landing... still crying now every time I think about it!

Goskydive also said they had the best day ever and that they want to put some media coverage about it on their website/facebook etc... as now this could open more doors, for kids like Jake, to follow their dreams! WOW! so overwhelming! They really were an incredible bunch of people... and I can't thank them enough for what they have done for Jake.

So... have a look at YouTube and we have uploaded some of the amazing pics in the general gallery to!

So... Jake is now planning his next adventure!!!! - watch this space!  and THANK YOU to everyone who have kindly donated to Jake's just giving page... we are nearly up to £2000 now for his school! WOW! THANK YOU ALL XXXXXX

March 2016 - "NEWS FLASH"

Jake is doing the jump! they said YES after his assessment would you believe... so he is doing the jump on Saturday 26th March at 10am at Goskydive in Salisbury! ahhhhh!! I certainly won't be able to watch!! He obviously cant wait!! He is soooo excited!! If any of you want to join us, you are more than welcome - Happy Birthday Jake!

Jake is also going to be raising money for his school doing his jump... as they are in desperate need for a covered walkway from one building to another, and when its raining the kids in their wheelchairs get soaked! So Jake is raising money to help build this covered walkway... we have had so much support over the years and now we want to give something back, the school was the obvious choice as they are an amazing school and they do so much for our kids - and for us parents! the link for this is under the EVENTS tab with all details on there.

So... its happening! ahhhhhh... he will be video'd too so watch this space!!

September/October/November/December 2015/January 2016 - Well huge apologies for not updating sooner! time just seems to fly past!So ..... lets see how Jake gets on this year at school! Got a meeting in November with Jakes consultant to review the MRI situ! see if Jake plays ball this time! So will of course update you all on that!

Jake is doing great in post 16... really enjoying it and working so hard too. His school yearly review in November was amazing... he is working so hard in all subjects and really pushing himself, so proud of my boy and with all the difficulties he has had to face he still fights through it all. He really is an inspiration to us all (dont tell him I said that though!)

Xmas came and went with a blink of an eye... he got an iPad he has wanted, and although he needs help with it he loves it... thanks to Round Table Make-a-Wish who helped me buy it for him for Xmas.

So into the New Year... and Jake's 16th is luming! and his wish this year... to jump out of a plane sky-diving!!! sooo... in a few weeks he is going for an assessment to see if this is possible! I dont want him to do it... but as he says "I'll be 16 so tough!" he is such an adrenaline junky and ups his adventures everytime! The place we are taking him to have said 'IF' for medical/physical reasons they can't allow him to do it they are going to see if they can take him up in an acrobatic plane instead! ahhhhh... I wont be able to watch any of it! If allowed to do one or the other, he is going to raise money for his school, so watch out as he will be after sponsors!!!! - watch this space!

He is still refusing an MRI too! a battle I seem to be losing! he says he doesn't want to be prodded and poked anymore... and will only allow an MRI IF he deteriorates! ahh... what do you do! he is nearly 16 with a mind of his own! and rights! apparently! so... we'll see if his consultant can talk him into it as it's been a few years now since he had one.

To be honest not much else to report! who would have thought in 2009, when he was diagnosed and was given approx 2 years to live, that I would be sat here planning his 16th! it just shows you that the Docs aren't always right hey! and thank God they weren't!

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