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 2011 - Well another success trip to the ISST for Jacobs physio and they got him walking again!... within 2 days! That place is amazing! Jacobs right ankle has been very weak and tending to flop to one side which made walking impossible... they have sorted that ankle out and he can now put his foot flat on the floor! His ankle still has the odd tendacy to flop but we now know how to correct that! I have added some new pics on the website under treatment gallery for you to see what they did with him. We have booked to go back in April for more intensive physio to keep him going! Also we have now had confirmation that Jacob can go to Victoria school - a special needs disabled school - so they can now help us keep up with the physio. Its great being in Germany and them getting him to walk but we have to maintain it here, as you know through our diary we have found this really hard doing this ourselves... now we have some help! Martyn and I went and had a good look around the school just before we went to Germany and its brilliant... they have all the equipment Jacob needs... obviously not everything that Germany have BUT the best we can do in this country. So our hope is to maintain his walking now... he isnt walking unaided... ie Martyn and I hold his hand... or if an adult sits in his wheelchair he can push that... his legs are a lot stronger and he can stand on his own unaided for about a minute or so, so the plan is to keep him going and to get him walking unaided, if not here definitely in Germany in April.
 
So back on track and hopefully keep improving Jacobs walking! We are also underway with a charity night in March to raise more funds as again we do have to pay for the physio in Germany... which works about 800 euros per day... and he will be doing 8 days physio in April... it isn't cheap but worth every penny to see Jacob walking again! he was so chuffed with himself he smiled constantly for the 6 days he was there! he did manage to do a few steps unaided as well and he was really chuffed with himself for that! so no more crawling about and being carried about by us! give our backs a rest as he isnt exactly light! so another positive update! will keep you posted on how he gets on at Victoria school!

February 2011 - Well February saw more improvements for Jacob after his Lumbar Puncture in Nov and his physio in January. He is still managing to walk about with help! Not long distances at all... but much better than he has been. We are definitely going back in April for more physio as they reckon they can get him walking unaided... so we're desperately trying to manage his walking between now and then... and finally we have some help!

Jacob had a couple of taster days at Victoria school this month and loved it! so much so that he wants to be there full time! they are helping us in managing his walking and all other physio that he needs... from the Gym to the Hydro Pool. This school is amazing... and will be helping us with Jacob's wheelchair as it still isn't right... to all sorts of help that we haven't had. The light is at the end of the tunnel as they say! Such a relief at last! We have also noticed that Jacob has more energy and is definitely more alert and on the ball. His focus seems better and he is thinking all the time and wont shut up! something has definitely happened from the 2nd Lumbar and the physio... somedays it almost feels like the old Jacob is back, as he was always on the go and never stopped! he doesn't seem to be so tired and he's full of life!

Jacob's birthday was on the 23rd and we got him the new DS XL version, so the screen is bigger for him to see better and to help with his hand/eye co-ordination... In fact he is on it right now playing footy! He had a great birthday this year... and we are off to see XFactor soon, as part of the rest of his pressies!

So a great Feb... better than last year I can say!

So let's hope these improvements keep coming and will let you know how he gets on at Victoria School!!!

March 2011 - Well March was another busy month... Jacob has been able to maintain his walking since we came back from the physio in January... which is great... and he has now started Victoria school full time and everyday they have him walking around as much as he can... plus he is swimming there and all multisports... in and out of his wheelchair... so at last we now have help with his walking in this country! He is really enjoying it there and hopefully they can help us maintain his walking and improve as well! We are off to Germany again in April to hopefully get him walking unaided!! He is probably managing 10 mins at a time with his walking with help at the mo so at least we have something to work with now! We booked more physio while we were in Germany in January as we hadn't had the confirmation of when he could start Victoria... but we made a decision to still go ahead with Germany as the physio is stem cell therapy physio, so different to here... but also we didn't know exactly what Victoria school could do... so fingers crossed, when we get back from Germany in April, Victoria school can keep him walking!


Jacob also went to see Xfactor live in London at the O2 as part of his birthday treat... 15 of us hired a mini bus... mums and kids... it was amazing... have put a few pics on the website on the general gallery page.

We also had another amazing successful charity night which we managed to raise the money for the April physio... it was a great night... plus one of the manufacturers I work with - Alan Deane - did a half marathon in Reading as well... plus a cake sale from his just left school!! and where my God daughter goes to Ballet they are also doing a fundraiser... so the support we have had from our community have been amazing! Thanks to you all!

Since Jacobs 2nd Stem cell lumbar in Nov we have noticed that he has seemed to improve mentally... he is playing his DS Lite more and more and seems more alert and full of energy... Xfactor was a long day - 10am we left and got home at midnight and usually the next day he would be wiped out... I was! but he was up for going for a swim! He has good and bad days with his walking... but he definitely seems to be maintaining the good days and there hasn't seemed to be many bad at all (touch wood) also mentally as well.

So... fingers crossed for our next trip to Germany and hopefully he will be walking about a lot more, ready for the summer down the beach!!

So next update I hope to have some walking unaided shots!!!

April 2011 - Well another month passes by so quickly! and it seems like ages since we have been back from Germany for Jacobs stem cell physio.  We did 2 weeks this time for a real boost... and Jacob for the first week did really well ... have added some pics on the treatment gallery.  He worked really hard... then... the second week! different story! our 11 year old boy who has started puberty with attitude big time decided he couldn't be bothered! couldn't believe it! tried every trick in the book and nothing! never has he been like that there before! the therapists Bettina and Christiana couldn't believe it either and they really had their work cut out as Jacob is so stubborn when he doesn't want to do something! so the first 4 days were a battle of wills more than anything... well not impressed! BUT one thing we did notice was that although he was being lazy with the walking as that is the hardest part of his disability... his hand and eye co-ordination improved and he had a punch bag he had to hit with his left and then his right hand... and he always got a bit confused with what hand to use... well he was jabbing left to right and did really well... he also seemed to be able to focus a lot more as well with his vision... again this disease has effect his eyes... no-one really knows how as he can still see... its like it takes him longer to focus on something... but since this trip to Germany his focus has improved it's like he has come out of the haze more.  Hard to explain but he would on occasions go into his own little dreamworld... he is now more switched on and raring to go!

Anyway... 5th day comes and I said to him that he can forget Thorpe Park which we have promised him if he tried really hard and a possibility of getting a dog! which however is what he has always wanted! and my husband doesn't! so stuck right in the middle of this one! BUT as Jacob hadn't tried hard the second week he had blown that! so I reminded him of all this again and again... then on that 5th day I loaded him in the car and forgot his wheelchair! couldn't believe it! got to the ISST... opened the boot and no chair! so guess what! he had to walk! and he walked pretty much all day apart from a few times and we had to borrow one of the other customer's wheelchair! luckily she was on the waterbed at the time so wasn't in it! and then... flight lands and he decided he wants to walk off the plane... so he stood up holding onto the seats in front and then walked down the isle holding on to the top of the seats... it took him a while bless him and the Captain and crew were clapping and cheering him! which of course he loved! he got to the end of the plane and turned to me and said "now I can go to Thorpe Park and get a dog! We were so proud of him for doing that! BUT this may sound hard... but said to him he needs to keep this up for a few months before we will consider the treats!

And so far he has... really trying and really trying hard at school as well since he has been back so, long may it continue.

So we've been emailed with the same question from some people..."are we planning another trip back?" At this stage not sure... always had gut feeling he would have 2 Lumbars and 2 Physio... well he had 3 physios... Jacob can have a 3rd Lumbar if we want him to... but at the moment after the last 18 months of flying back and forth to Germany we are going to chill a bit and see how he goes... he now has a school that can really help with the physio now and he has his goals and, of course, every week bar being away he has his healing from David, Yoga from Julie and Radionics from Lynda... never would stop that! I do notice when he misses a week with David and the healing he is soooo ready for a boost again... and the yoga has really helped with his hand and eye co-ordination which I hadn't thought about till I saw him in Germany as Jacob and Julie shut the door to the lounge and get on with it so I haven't seen recently what he has been doing... and Lynda as always in the background doing her Radionics on him... so we are going to manage the situation here for a while and see how he goes and hopefully have some fun!!

Lets see what May brings...

May/June 2011 - Well where has the time gone! so sorry for being slow on the update! thought I'd done May!! so have thrown May and June together!!

Well ... all is good here at the mo... Jacob is still loving his school and having all the physio etc he needs which is so great... he is doing really well... still maintaining where he was in April... he can still walk out to the car in the mornings to go to school and stand to brush his teeth... still with help... but he has got strength in his legs to do it... he is working really hard at school with his speech/walking/life skills etc... he had sports week there recently and we've posted a few pics on the general gallery... the main thing is he is so active there... and in the summer hols he has 2 weeks there on their activity days and he is going to be water-skiing/kayaking/canoeing/sailing etc etc... every water sport you can think of with specially adapted equipment! he is so excited about that! and he will be spending 2 nights there as well!! which I am so excited about! time for R and R!!

So coming up for school hols so we need to make sure we keep him as active as possible through the 6 weeks... you have to keep him going all the time... so gearing up to that... still got some charity money coming through... £450 from a local church - St Georges Methodist Church... which was lovely... and both the boys got given an Xbox from a charity called the Amelia Grace Foundation, and Jacob has been loving playing the xbox... its great for his hand/eye co-ordination and also for using his right hand... and he can now play with his brother... as there are a lot of things he can't do anymore like go the park for example or play with lego like he used to with his brother... so now he can play the xbox instead! Also we are trying to give Sam, our other son who's 8 years old, some of our time now... and he is doing OK also... he has had some councelling for anxiety etc as he was only 6 when he saw his brother go from a normal loud 9 year old to being in a wheelchair without being able to speak or move really when he got really bad... so now its a bit of Sam time... and he is doing drumming lessons and is getting very good at it... and he did a demo at the school summer fair the other day... and he was brilliant... he finally got some attention of his own... so trying to balance the kids really now and to give them both equal time...

So... we are managing the situation and will see what happens... he is still on all the supplements and still has all the healing etc... which we are going down to fortnightly instead of weekly as he is maintaining his energy levels now really well... we don't know if he will need a further 3rd Lumbar or not... so we are just going to wait and see and as I said before really just enjoy normal life for a while and have some fun!!

So I hope you all have a good summer... and will update you all soon... and in the meantime if you need to know anything just drop me an email...

July/Aug 2011 -
Well July and August have come and gone and been busy with MORE treatments for Jacob! It was picked up through his radionics healing that he had some kind of infection in his gut... and Linda who does the treatments recommended us seeing a chap called Dr Pearlman who is a holistic chiropractor. Well, we took Jacob to see him and he picked up a yeast infection, which was quite bad, in his bowel. He recommended certain supplements for Jacob and also has been doing some manipulation on him with all his wierd and wonderful machines. Within 24hrs of putting Jacob on the supplements Jacob was on the loo! He has suffered with constipation since he got Ill (nearly 2 years ago!) and this has seemed to do the trick! He goes to the loo everyday now and his tummy isn't bloated anymore. He also recommended another special diet... no yeast/sugar and still keeping to the low fat diet... most foods, on looking, contain either sugar/yeast or both! So we are having to make food totally from scratch, he also isn't allowed dairy... just rice milk/goats milk/goats yogurt etc... he has stuck to it really well and it is definitely making a huge difference... we think with this disease the foods definitely make a difference to their bodies... and Jacob's body is responding really well to the new diet and supplements... he is still doing it and we will see for how long when we have our next visit.

David and Julie who do Jacob's healing and Yoga have moved to Cornwall (boo hoo) they are still doing Jacob's healing once a month but introduced us to their friend Penny who has taken over when we don't see them. She is working well with Jacob and is also now having all sorts of different treatments like reflexology and that seems to be benefiting him as well. Also through my work I met another lady called Veronica and she is doing some work with Jacob more of the psychological... as Jacob is now 11 and hitting pubery big time and still has the 'can't be bothered' attitude! so frustrating... but she is kind of hypnotising him to believe he can do things he couldn't before - but he has to put the effort in!!

Jacob has had a great summer... he had 2 weeks with Victoria school adventure weeks through the summer and went canoeing/power boating/sailing etc... he of course loved it! and he also slept over there twice on their special adventure nights!! 2 nights off!! it was great for a bit of R and R ... his brother Sam, now 8, went to Nannies so it was lovely to have a few days to chill out!

We went to Devon for a few days and had a great time... we even went on a helicopter ride which was amazing!!! have put some pics on the galleries...

Victoria school have also been doing physio with Jacob through the summer so his walking etc didn't deteriorate... and I'm so pleased to say that he HASN'T! and is doing really well, when he can be bothered of course!!!

We have an appointment to see the consultant in Sept and they will probably do another MRI and adrenal gland check so we shall see how that goes... basing it on his symptoms and also living with him 24/7 we can't see any signs of deterioration at all... but the MRI can give us the actual proof for that... so will update you all when that happens.

Thats about it for now... survived the summer with the kids off! Thanks to Victoria school and their great activity weeks!

We shall also see how it goes with Jacob's new treatments as Dr Pearlman also reckons he can do more physically for Jacob as well... of course will keep you posted on that!

So look out for Sept update... again if there is anything else you would like to know please email me...

September 2011 - Well back to school month!!! Jacob couldn't wait to get back to school... he is loving Victoria School and doing really well. He has a chap called Andre doing his physio now as I think Ellen was struggling with him as he now weighs 7 stone 10 lbs and is 5 foot 1 inch! getting bigger by the day! Andre came up with the idea of wrestling boots for Jacob as they are a lot higher than his baseball boots, they also have extra padding on the ankle area... and seem to be helping him with his walking - which is great!

Jacob has been seeing Dr Perlman for a few months now and he is doing wonders with Jacob! Jacob is on a lot of other supplements... one in particular called Ashweganda... which is for the adrenals! and for proof that it is working, Jacob had his yearly adrenal gland check at the hospital last week... and his adrenal are A1! great news! Dr Perlman is also buying a special machine, that apparently has shown some amazing results on people, and wants to try it on Jacob when he gets it! so I will update you on this when I see it, and get a good understanding of what it does!

Jacob's supplements from Dr Perlman seem to be making a difference - and Pukka Herbs where we get them from - are great... his yeast infection cleared up so quickly with the supplement Neem that he was on... and he is now taking Optimal Learning drops for his vision/concentration/hand-eye- cordination... Jacobs vision... although he can see fine, sometimes can't judge the distance etc... now he seems, most of the time, spot on! He is on these for 3 months so will have a better comparision when he has finished the course.

I do advise though not to just go out and buy this stuff but seek a practitioner first... if you want more info on this please email me.

Jacob has joined the after school athletics club as well!! So we shall see how he gets on with it!

He is booked in for another MRI on 16th NOV 2011... so that will hopefully give us the results we want... ie. that the disease still hasn't spread! So will update you on that... probably Dec, when we get the results!

So thats about it for September... watch this space for more info on Dr Perlman!

October/November 2011 - GOOD NEWS... Jacob had his 3rd MRI scan and the results show that the disease HASN'T SPREAD since the first MRI in Oct 09 when Jacob was first diagnosed... as you can imagine we are all over the moon!!!!

Jacob is still seeing Dr Perlman and is still making progress... he is also still having his Radionics treatment with Linda and healing with David and Penny. He is still on a low fat diet... but we have started to introduce dairy etc again in small portions as his yeast infection etc has cleared up completely. He is still taking all the supplements etc as well...

Jacob is doing great at school and recently we had a review and they showed us how far Jacob walked... with help... but he walked the length of a big sports hall and round the corner! The school are getting some pics together for me so I can put on the website... so he is doing really really well. Couldn't ask for more for Xmas!!! Now need to concentrate on Xmas before it is 2 days away!

Hoping you all have a good Xmas and if there is anything you would like to know, please email us.

Merry Xmas and a Happy New Year from the Whitehouses.

December 2011/January 2012 - Hi all... well Xmas came and went and Jacob got a snake for his Xmas pressie (pics in the gallery!) he wanted a pet and we've had reptiles before we had kids... so said OK! a corn snake called Sophie! had a great Xmas and now we are already at the end of Jan!!

To be honest nothing much to report... still continuing all the treatments etc... no plans for a 3rd Lumbar as the MRI results told us that the disease hasn't spread... so, dare I say it, just getting on with normal life.

Jacob is doing brill at school... he is getting a new wheelchair that goes to standing position... as he is now just over 5ft 2inches and 8 stone... he has good strength in his legs for standing but he is now bigger than me and having trouble walking him etc... they can do it at school as they have strapping lads there! and 2 of them do it... but here it's me who is 5ft 2inch and weigh the same as Jacob! and soon he will be catching up with Martyn! so the thought behind it is we can stand him in this new wheelchair... he needs to stand at least 2 hours a day, on and off, for circulation and to keep his legs mobile etc... he also has special knee pads that help and of course his wrestling boots which support his ankles better... so everyday he walks with the help at Victoria school... plus all other exercises etc... which is great. Also, through Mobility, getting a car I can wheel him into... as he is growing and not stopping! so that will be so much easier than having to faff about getting him in and out of the car... especially when its raining! and also sorting the wheelchair as well... trying to limit the amount of transfers we do.

He is still doing athletics club after school on a Monday... the hope is to get his upper body stronger so that he can help himself a bit more...

And finally won our respite battle... so he is staying 1 night a month at Victoria school so we can have a break... and more importantly spend some quality time with his brother Sam! So after 9 months of fighting we now have the respite/stairlift/ramp for the front door and a new car soon... I never realised how much fighting and shouting we would need to do to get some help, but now we have, it should make life a bit easier.

So... thats about it for now... anything else you need to know just drop me an email!

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