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

Jan 2010 - Started Radionic treatment and yoga.  Started to become less tired and more alert.... did a few days at school here and there, still very tired and having huge probs eating/speaking and walking... shakes and tremors started to get better though, and he started to be able to drink with a cup with a bit of help.

Feb 2010 - the day we had been waiting for since Dec - Feb 11th 2010 Jacobs Lumbar Puncture.  Feb was a bit of a haze... as all of it seems know actually... by the end of Feb after the Stem cell treatment and the buzzes etc we were doing Jacobs face started to change... he was eating a bit better and his face seemed to be not so lop-sided. And he started to drink through a straw again, also started playing with his toys again.

March 2010 - eating really well... still helping him eat as right hand still clawed so can eat finger food... food not getting stuck anymore and face looking better each day almost back to normal!... also Jacobs balance and co-ordination were improving we think due to the yoga and healing.

End of March - Jacob's right hand started showing signs of not being so clawed up, his posture and balance was better, he could sit and hold himself much better, eating took 20 mins instead of 1-1/2 hours. Drinking with a cup without many spillages! back to school not far off full time. More energy and much more alert, walking still an issue and speaking clearer but still slow.

April 2010 - Back to Germany for 6 days intensive physio, end of the physio right hand 90% unclawed.... walking approx 20% better. speaking still slow but clearer, posture, balance and co-ordination 50% better.  Jacob was making improvements everyday... little ones... but little ones make big ones. And one great achievement... 2 weeks before the Easter Hols Jacob had returned to school FULL TIME! has 2 teaching assistants and is in class full time. His first day back all the kids in his class stood up and started clapping and cheering... it was so overwelming to see... I cried and Jacob told me to shut up and go away!!! charming!!

May 2010 - Jacob is eating with his right hand with a spoon and folk... struggles with it... but is doing it, we continue all the treatments and physio we have been shown and Jacob by the end of April (and hunting about for suitable cutlery) is doing really well with his spoon and fork. He has better days than others... so somedays he just does it without thinking and sometimes needs a little help as his hand gets tired as we now need to build up the muscles in his right side.

Face is back to normal... dribbles from time to time but 90% better, speech is clearer, but still slow, walking still an issue, but much better, he even picked up his DS the other day... he couldnt even hold his DS in Nov. Practising writing his name with a pencil.  Jacob wrote his name on his own for the first time since Oct, it was a great attempt and you could read what he had put. Energy levels are up and still managing full time at school and having fun at weekends. Jacob missed his 10th birthday in Feb due to his lumbar puncture so organised a belated party with 45 of his mates! he had a great time... attitude is returning... has a girlfriend, and a hareem of girls at school.

The whole school are behind Jacob 100%, you can see in some of the pics in the gallery. Jacob is full of life again... having fun with his mates, making them laugh, we are going out and about again, Jacob got used to his wheelchair eventually and we can now go out as he still needs it... but still doesn't and won't have it at school.  Even when he was at his worst he still managed to walk in and out of there! He has been on 2 school trips now and all the kids fight over who will push and look after him. Amazing even reading this now I can't believe we made it though Oct till now.... but we did and we will carry on..... booked to go back for some more physio in Aug and a Stem Cell Assessment to see if Jacob needs another one... fundraising has gone mad and jacob starred in the local paper! then got called about some national magazines! have had time to reflect and without all the support we have had from everyone I dont know if this website would ever have been thought of!

June 2010 - Jacob decided he wanted to ride his bike again! Obviously his own bike wouldnt be secure enough so we all had a chat and decided it would be best if Jacob tried a Trike... a 3 wheeler! Did call the Occupational Therapists to get help on this, maybe Jacob needed to be assessed on a bike etc... got no-where with them... so back to sorting out ourselves!! went through the internet and found a place in the New Forest that hired bikes www.newforestcyclehire.co.uk

Called them and spoke to a lovely Lady called April... that was wierd as haven't met another April before!!! she has had some experience with disabled kids and recommended that I bought Jacob over to see how he would get on using a trike. So thats what we did... and you can see by the video link on the home page he did amazingly! April suggested that we hired the trike for the weekend to see if he could manage it for the weekend. He did and even rode the trike to school on the Monday morning.. leaving some people with their mouths open as he rode into school! An amazing achievement... so you guessed it... now looking at buying him one! April got some special pedals so at least his feet didn't slide of and it worked... so underway with buying one of those now! Didn't want to leave Sam out... so he has requested a BMX! at least the boys can now go bike riding again together! Yipee.

Also... as explained before we still continue to research.... I stumbled across a fantastic place in America that do Dolphin Therapy.... I have been looking for ages at this as Jacob's and my dream is to swim with Dolphins in the wild... not captive! and I was struggling to find a place where they did a programme but in the wild! and I found the perfect place... www.waterplanetusa.com this place is amazing... they run 2 programmes through June and July only... one called the Harmony programme and one called the Serenity programme... So... after speaking to them and looking at their website... we took the plunge and booked as they had 1 space left for July only... and didnt want to wait a year. So we go on the 14th July!! cant believe it... Jacob is so excited... so are we of course!

It was of course Father's Day in June... and I had planned with the school to get Jacob practising writing his name as wanted him to write out Martyn's Father Day card.... and he did!! Martyn was well chuffed and so was Jacob!


July 2010 - Well July was a very busy month... we took Jacob to USA for the dolphin therapy which was great. Swimming with Dolphins in the wild and holistic therapy. I wouldn't say it gave much improvement... more that we all had an amazing experience swimming with Dolphins and fish out of Nemo! Jacob built his confidence swimming again... since he got ill he has lost his confidence in the water and will not put his head in... pre illness Jacob was an amazing swimmer, you couldn't get him out of the water. So this was great to see him in the middle of the ocean with all the fish and Dolphins with his goggles and snorkle! He even managed to get in and out of the boat climbing the ladder!
After the week with the Dolphins we did Disney... which as you can imagine Jacob loved! especially the rollercoasters!! so fun was had by all... till we got back!

Didnt really take into consideration jetlag!! which hit us all really badly when we got back... coupled with Jacob getting a bad chest infection. He was very weak and tired, it took him nearly 3 weeks to get over it. When Jacob gets ill now with a normal illness/bug it does knock him back... its like 3 steps forward and 2 back... which is so disheartening and worrying... kept thinking should we have done this?? was he up to it?? etc etc... but we did it and survived it... just! The other worry was... would we make Germany... as we had booked to go in August for a consultation and physio. So did we make it.................

August 2010 - We did make it to Germany!! Jacob was so much better a few days before we were due to go that we decided to take the plunge... only 1 hour flight etc etc. So we went... saw the consultant who basically in a nut shell was pleased with Jacob's progress and has recommended a further Lumbar puncture for November. This time apparently they can direct the Lumbar puncture into certain areas... so they are concentrating on the legs... to help him walk better. Out of all his symptons this is by far the worst. We then saw Bettina from the ISST physio and together with the ISST, XCell center and us have planned Jacob's next treatments... Nov Lumbar puncture and Jan 2011 6 days intensive physio as before. So fingers crossed this will help even more. The physio team were very impressed with Jacob's right hand as it is unclawed most of the time now... and he has been using it a lot more... mainly to eat... the problem we have is that Jacob has never been one for writing and is very reluctant to do it... which is so frustrating as I know, with practice, he can... like he did in Martyn's father's day card... but unless Jacob is motivated to do it he will take the easy option... so it is very hard to keep on at him all the time and pushing... but we have to... and Jacob knows this and has us over a barrell!!

This disease is so nasty affecting kids in this way! BUT we wont give up... and we go on at him till we are blue in the face! as unfortunately he has to do all the hard work! The treadmill we got has been a disaster... he wont go on it as he doesnt like it... and it is a real struggle... but it really helps his walking and strenthens his legs... the problem is since he was Ill with his chest infection and the jet lag he has lost the motivation as he was on a role... so its getting him back on the ladder again! Unfortunately his body wasn't up to much physio in Germany as the appointments we had were early on... but through the week he did get better and stronger... so now we are home and getting him stronger to go back to school. He may do part time for a while to get used to it... we shall see... so all in all a very busy summer being away! lets see what September brings!

September/October 2010 - Well so much has happened in Sept/Oct decided to do as one month! So Jacob went back to school Sept... started part time for a few days and then went straight into full time.

Doing really well in Year 6. His statement and school plan by the amazing help of the teachers means that Jacob has to read 10 mins everyday, he has to write 20 mins everyday... to rehabilitate his reading and writing. He is also painting and making things ie rollercoasters - as year 6 topic has been about that, Jacob even went to Paultons Park, a Theme park with rollercoasters to learn about them and to go on them - he loved it! Jacob also has a new computer at school, a special touch screen computer/chair etc which the school got £2,000 funding for! Jacob's school is the BEST! He has even started drum lessons!! which he loves and is really good for his co-ordination and using his right hand/arm... so thats going well. His mobility however isn't great. Since coming back from the physio at the ISST in Germany in April his mobility has started to get worse again... he needs proper exercise every day not the physio the NHS offer... so yet again trying to sort all this out ourselves - Jacob isnt allowed to use the equipment at the hospitals as he is under 14!! so we are yet again left on our own to find somewhere that can help! Again Jacob's school has been helping us with this and there are some special needs schools for disabled kids that have the equipment! BUT it all takes time to sort and I dont have time! So got intouch with a good friend who works at our local gym and they are helping us! Although the equipment is for able-bodied people Jacob has been 3 times now and done quite well. He has used the treadmill/bike and the rowing machine.... he can only manage 15-20 mins at the mo and the idea is to take him 2-3 times a week and get his mobility back on track. Also found a company in Canada that deal with specialised equipment which looks promising so will keep you updated on that!

Good news... Jacob had his adrenal glands checked, and a year later still all working as they should! had another MRI scan a few days ago and now waiting for the results so fingers crossed for that! Booked and sorted the Xcell Center again for his 2nd lumbar puncture... we go on the 19th Nov! and have sorted the next lot of physio for Jan 2011. Jacob also hit the national press and got a double page spread in Full House Magazine... so that was weird to see!

Bonfire night is nearly here and Jacob's school yet again are raising more money for us! He is going to be pushing the plunger to let off all the fireworks! looking forward to that!
Fundraising has been going really well so we are able to still continue with all the treatments.

So really, as an overview... from the waist up Jacob is doing really well... it's the legs! so hopefully by doing the gym that will help and then ofcourse we have the 2nd lumbar and then the physio!

So next update will be after Jacob has had his 2nd lumbar puncture and hopefully we would have had the MRI results back. So fingers crossed for a positive Nov diary update!

November 2010 - Well November was a busy month! Bonfire night fundraising was a major success... the school normally have 1500 odd people attend and they reckon they had 3500-4000!! still dont know how much they raised... BUT it was amazing - Jacob had a platform which he sat on in his wheelchair with a few of his friends - and pushed the plunger to set the fireworks off! so that was great. Stourfield school is the best, I have to say!
Got the MRI results back! apparently the disease HASN'T SPREAD! which is great news. They compared it to the MRI scan they did in Oct 2009 when Jacob was first diagnosed. Apparently the 2 MRI scans are identical. What they cant tell us is if the damage that has already been done is fixing itself or not! But we shall wait and see! something is working that's for sure!

We have also just got back from Germany for Jacob's 2nd lumbar puncture. He did really well again... just a slight back and headache... and already wanting to go back to school!

They were very impressed in Germany with Jacobs progress and we are going back in January 2011 for the intensive physio... to get those legs working as best we can. So we shall see what difference the 2nd lumbar puncture makes... this can happen over a few months though as we begin work with the physio etc... so will keep you all updated with any more improvements.

Through our website and magazine articles a few families have now booked the Xcell Center in Germany so we wish them all the success that Jacob has had.
Now trying to think about Xmas!! where to start!

So... I hope you all have a great Xmas and if there is anything you need to know please email!

December 2010 - Happy New Year to you all! we hope you had a lovely xmas... Well we nearly had a white xmas down in the South! it melted just before xmas, but before it disappeared the kids had a whale of a time in the snow... have put some pics of them building snowmen in the general gallery!! Jacob is doing really well bar his legs which we hope, when we go to Germany in a few weeks, they can get him walking better.

Hardly any side effects to the lumbar puncture bar the first few days when he had a slight back and headache, which is normal.

Xmas was lovely and the kids had loads of lovely pressies... one of Jacob's was his Ex n flex machine - see picture in treatment gallery. He did get lots of other pressies aswell! We researched this machine as it costs £1400! BUT the reviews were amazing and people have found this machine to help their walking etc. There is lots of information about it on their website www.exnflex.com or you can email Linda who was extremly helpful lablack@exnflex.com, if you contact Linda mention us to her as she will know what machine will be best for our childrens condition. The exnflex is being used in many therapeutic applications which include MS, brain traumas, stroke and all sorts of neurological diseases. The machine has the legs rotated by a motor similar to cycling and provides daily range of flexing and working the joints, muscles, tendons and ligaments, it also doubles up for use on the arms, again with the motor rotating the arms. Jacobs feet and ankles are strapped in so it is very easy and safe to use. When he uses the arm part his arms are strapped also. The benefits of Jacob using this machine is to maintain his flexibility and reduce stiffness, increases circulation, decreases spasms and spasticity, also helps with co-ordination, energy levels, strength and endurance. We decided to get him the machine that does both arms and legs.

We decided to invest in this as after we came back from Germany physio in April last year his walking was great... but slowly his walking went down hill due to no proper excerise like the gym etc as we mentioned before. Now when we get back from Germany we have this machine... plus the gym and also swimming. We have recently taken him swimming again and he did really well. He has a woggle on and managed to swim a few lengths using both legs and arms... so we now have his exercises sorted so we can hopefully maintain his walking. Again thanks to our local community/schools and great friends who are still fundraising we managed to buy this for Jacob... and he does like using it... the treadmill didn't work as he couldn't be bothered to use it... this machine you can use anywhere so we put him in his wheelchair and he can watch his TV programmes while he works out! so... so far so good! It seems to be helping and he has moments where his walking is not so bad... so we will continue to use this everyday for 30 mins and see what happens. Looking forward to Germany as I know they will help his walking! they did before!

So... we are of to Germany on the 21st Jan and hope to report back that his walking has improved!

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