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

November/December/January 2015 - Hi all I hope you had a good Xmas... Already into the New Year... time does fly!

Well Jake has had a good Xmas and gearing up for his 15th Birthday! he is still maintaining so not much to report! apart from all the fun he has been getting up to!

Jake's school (Victoria in Poole) organised for Jake to meet with the rollercoaster engineers who design the rides at Alton Towers/Thorpe Park etc... and he had an amazing day... giving jip as to why some of the rides aren't accessible to him!!... and also giving them ideas as how to!! and telling them to build a proper disabled ride!

He then went to Airkix in Basingstoke... indoor skydiving can you believe with another couple of kids from the school! (link attached so you can see what he got up to!)
http://www.victoria.poole.sch.uk/livability-news/three-lucky-students/
Had amazing time flying through the air! but Jake being Jake doesn't stop there! he now wants to do it for real out of a plane at 10,000 feet! looking into it... BUT not promising it at the mo! although knowing Jake he will bully me into it!

Jake still keeps in touch with a few of old buddies from Stourfield school and recently Leanne Weeks and Jake Pointer with the help of Twynham school in Christchurch raised over £1000 for Jakes charity! amazing! and so very grateful!

And then... I get another call from one of Jake's friends -Jordan... and she is at Bournemouth School for girls, and she recently got chosen out of alot of different schools to put on a charity event... she chose Jake and she won! so we are now underway with organising that! Its going to be a football themed festival event with tournaments, entertainment, face painting, bouncy castles etc during the day, and in the evening an auction... this event is also being backed by Barclays, SOS Recruitment, Reef and Beef Restaurant in Bournemouth, and many more! PLUS the actual Premiership Throphy will be on display as well! and you can get your photo taken with it!

The event is on the 9th May 2015... during the day the footy festival taking place at Ringwood Football club, and the evening the auction taking place at the Reef and Beef Restaurant. We are hoping to get footy players to come along, together with the event possibly being televised as well as local press... unbelieveable! We are underway organising this at the moment and also producing a website about the event and who is involved... so as soon as I have more news I will let you all know! amazing or what!

Jordan and her team are working so hard to organise this event and thankfully have 3 of the best mentors they could have - Julie, who owns SOS Recruitment, James, who owns the Reef and Beef and who is also an internet entrepreneur, as well as other countless fingers in pies! and Mark who works for the YMCA... so watch this space for more exciting news!

Jake left Stourfield in April 2011... nearly 4 years ago... and still his old school friends think of him often, visit and then come up with these charity event!! at their age of 14/15 and it just blows me away! how they always have a place in their heart for Jake... after all this time... and I would like to thank them ALL from the bottom of my heart....

February/March/April 2015 - Well its been a mad few months... sorry for the delay in updating!

Jake had his 15th Birthday down the pub!! with a lot of his old buddies! and had an amazing time... think we were the loudest there! cannot believe he is now 15! and still doing amazingly! in fact we had his annual review recently at school and he is doing really well in ALL areas... from school work to physio etc. He even came top in the science exam! he is now gearing up to do his GCSEs next year and is extremely dedicated!! for those of you that know Jake, when has he ever taken school seriously!! and asking for homework!!! so proud of Jake!

Been busy helping to get the charity event sorted too, and we have Bournemouth players now coming to the day! the premiership trophy! bubble Zorb footy tournament etc... its going to be an amazing day! Jordan, bless her, will see, on Saturday 9th May, her dream about this event come true! It just amazes me that years later all his mates are still there for him! SOS recruitements owner Julie and her PA Tamara (best PA in the world! I have to say!) and James from Reef and Beef are working flat out to get this event sorted! and SOS are sponsors for Bournemouth Footy Club, so thanks to Julie she has managed to rustle up their help! - so overwelmed really with it all... it just shows you there are still wonderful people in the world trying to make a difference!

Sam my youngest, my drummer! is also going to be playing drums with the band we have arranged through Sams music school ACMR, which I cannot wait for! and has been practising so as to put on an amazing performance!!! it's just lovely he wants to get on stage and do this for his brother!

So full steam ahead! The only other thing I wanted to be able to update you on was Jake's latest MRI... which didn't happen!!! Jake decided that he didn't want to go through all the prodding and poking, as the hospital also do adrenal blood tests as well... he basically refused and said if we take him he will wriggle about under the MRI and basically make our lives a misery! and knowing Jake, he would! so we spoke to Mark - Jake's consultant - and have re booked for end of the year. Personally I know Jake hasn't deteriorated as I would know, and going by his school report, it's all positive and improvements or maintaining... no deterioration at all... so I told Jake he is now 15 and he has a say... but haven't told him yet I've re-booked! This is the medical proof I have to show people that 6 years on Jake's disease hasn't spread... which, of course, I did explain to Jake... but his words were... tough! so we shall see what happens at the end of the year!

So .. all is good in the world of Jake... and as I always say... please get in touch if, like us, you're a parent who is dealing with your child being diagnosed with this terrible disease, and I so hope what we're doing will help others.

May/June/July/August 2015 - Sorry taken so long to update you all! time just seems to fly by! The charity event was a great success, and A HUGE THANKS to all .... Jordan/Tamara and the girls did SO well! bless Jordan for doing this for Jacob! just doesn't seem that long ago they were in junior school! and so grateful after all this time Jake still is in their thoughts!!! was a great day and night! and our good friend Tony came as his alter ego Mrs Brown! and worked the crowds! was great! (see pics in gallery)  we also had Steve Fletcher from Bournemouth footy club, and Sam did amazing with the band! was soooo proud of my boys! Chris who helps run Jake's charity and his own charity, helping in getting equipment for disabled kids, was also there ... smileforachild.co.uk without Chris it would be so hard to do! so a HUGE thanks to Chris also! we love you Chris!!!! Barclays bought along the premiership trophy which you could have your photo taken with  ... and was obviously very popular with the crowds! again you can see a pic of this with Jake in the Gallery. We had Zorb football which was so funny to watch ... so again THANK YOU ALL for coming along and yet again supporting us on our quest!

So here we are.... summer over ... and what a wet summer it was! and back to school! Jake's first week in post 16! basically after his school review it was decided that as he is doing so well he has been put up a year early! he is so chuffed and so excited as he is also know back with his old buddies who moved up a year ago! so, Jake now in school mode ready to concentrate on his options! Also now looking for a carer/personal assistant for Jake ..... 16 in Feb and is now not wanting to go out and about with his family anymore!!! Striving for his independance  .... so now looking for someone suitable for him. Time to start letting go a bit!!! very hard! but said to Jake I'll do the best I can! he will make it happen anyway as that's how he is! when he sets a goal in mind there is no stopping him! Off to Thorpe Park again soon! ahhhh ... hopefully weather will hold for us! as was so wet this summer we had to postpone! got a few of the chaps from Victoria school coming to help! as he is soooo big now I can't help lift him anymore! so watch this space! Jake can't wait! as he is such a rollercoaster junky! especially after meeting the rollercoaster engineers earlier this year!

Also a BIG THANKS to my friend Treena, who did a triathlon for Jake and did amazingly! who would have thought when Treena and I met at college that she would be doing a triathlon for my son!!! THANK YOU TREEN .... and another BIG THANK YOU to Derek Baynes who through his choir raised money for Jake too! we are so blessed ..... thank you all.

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!

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