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

February/March 2012 - Jacob progressing really well and loving school and life like he does. He had his 12th birthday and he had a party at the bowling alley with his mates from Victoria School and also his other mates. Went really well and a good time was had by all.

He is riding a trike again at Victoria school and after Easter will be doing more physio on his upper body so he can help transfer himself. He is loved up aswell!... with a girl from his school and puberty has hit in - Bless him! he has found so much motivation with this and wants to try and walk everywhere and help himself! Been waiting for this moment as he can be a lazy lad! Although with all that he has gone through he is an amazing person... always laughing and joking and looking towards the future as to what he wants to do... so proud of him.

Our other son Samuel who bless never gets a mention is becoming a brilliant drummer and is now on the gifted register! he has his own drum kit and plays to all of us! and has joined a junior rock band... so proud of my 2 boys. (have put pics on the gallery of Jakes birthday and also Sam drumming).

So... looking to move as well, as this house is unsuitable for Jacob now... mainly because he has grown soooo much... he is now taller than me, and heavier! so looking for a bungalow as we're struggling to deal with him here... never stops!

So a quick update... and as always anything else you need to know just drop us an email.

So now onto the move!

March/April 2012 - Jacob is progressing really well, he has so much more strength in his legs thanks to all the hard work Victoria School are doing. We had Jacob's school review which covers Physio, Speech and Language, Life skills and ofcourse School Work and this time has seen a marked improvement on school work... with memory and Jacob wanting to do it!! (which has a lot to do with it!!) his physio Andre is extremely chuffed with him, and the effort he is putting in, and being really motivated! - what puberty and girls can do!! his speech has also improved slightly as well. The big difference I have noticed is the strength in his legs and his own motivation... so proud of him! he is always laughing and having fun and has such a positive outlook on life - and is willing to try everything!

So overall, his school review was full of improvements and NO DETERIORATION! - which is just amazing! he is still on all of his supplements/special diet etc, and continues to maintain and improve certain areas - long may it continue!... lets see what June brings!


May/June/July 2012 -
Well 3 months on and Jacob is still doing so well. He has been walking the parallel bars at school, been on loads of school trips! had a special splint made for his hand (you can see pic under medical/physio) although his hand is so much better it still claws when he isnt thinking about it .. so Rhiannon Jacobs OT had a special splint made for him!

Jacob also, last week, had his adrenals gland check again so hoping that the results come back as good as the last 3 times! will keep you posted on that!

Victoria school had their sports day... another spectacular event (pics are under general gallery) this year was themed for the Olympics... and Jake went as Tom Daly the swimmer! again the school went to so much effort as you will see in the pics and fun was had by all! school out now! but Jacob has 2 weeks adventure days... where he will be going on boat trips, sailing, canoeing, other water sports, camping!!! you name it he is doing it! Sam is at drum camp for 2 weeks also and doing a gig at Mr Kips at the end of it! he is doing so well with his drums! in fact while I am typing this the pair of them are playing the Xbox... WWE Smackdown! they are both still mad on the wrestling! it's so lovely to hear them playing! anyway... bring on the summer and the sun!!! Hope you all have a fab summer and back to school and more updates in Sept!

August/September 2012 - Well Jacob finally made it to Alton Towers!! - his dream since he has been ill and loved it! Went on all the rides... (I couldn't bare to watch) and also managed to get him in the sea for the first time since he has been Ill, (bar America with the dolphins... I mean our local sea!!) - we only live 5 mins away from Southbourne beach, and he used to always be in that sea every summer. My friend has a beach hut and we managed to organise a special beach wheelchair - it was great!... he loved it being able to get in the sea again! We put a rubber ring around around him and threw him in! However America was a lot warmer that here!! (pics on the general gallery). So we managed to get him to do the 2 things he has been wanting to do for ages!

Back to school at last!! Jacob had his results back from his Adrenal test and once again all is absolutely fine! even his consultant is so pleased with Jake - no deterioration etc. Just waiting to see if they are going to do another MRI scan to see if the disease has moved at all...

So... he is still doing great and the school are still walking him etc... and now we are looking into a new wheelchair... one that goes up to a standing position... for £26,000!! - more than a car!!! - hoping a charity will help us... and also a group of us are doing the South Run on the 28th Oct! so we shall see!!

October/November/December 2012 - Well me and my friends made the run!! we raised £4,117.06 in total!! I would like to say a BIG THANK YOU to all my friends that did the run – 10 miles!! – not easy!! and a MASSIVE thanks to all that sponsored us!! Couldn't do this without you all!! (See some pics on the events page) So hopefully, with that money and help from a charity, we can get Jake this wheelchair he needs! I hope.

Jake was asked at school to join a load of bikers that were raising money for Victoria school and he had a go on one of the motorbikes!! (pic in the general gallery!) he had an amazing day and the bikers were so lovely! (it was a dress up for Halloween and Jacob had his mask on which went well with the bike he went on!)

Jake's doing really well... loving school still and is doing a lot more physio and weight training!! he is so self-motivated at the moment... probably because he is nearly 13! he has worked really hard at school this year and we are soooo proud of him! So still maintaining his condition and in the Spring we will have another MRI to see what's happening... to start with we had so much to say each month with his improvements... but as he is maintaining and NO deterioration I haven't as much to say as usual!! Everyday is a miracle with him and long may it last! Have added December onto the diary as mid Dec now and gearing up for Xmas! Jacob's want list is endless!! but we do have some weights for him which I know he will be chuffed with as, at the moment, all he wants to do is gym/physio!! – and build up his muscles!! although can't have him heavier than what he is!! he is now 5 foot 4 and weighs about 8 stone 9! he towers above me now! My other son Sam is doing well also... and is drumming away! He's got his Xmas show next week which will be fab!

So hope you all have a lovely Xmas and lets see what 2013 brings!!

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