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...


Jacob's team...
 
Jacob has a team of dedicated people surrounding him (and the whole family of course) which have been invaluable, and to which we would constantly like to thank from the bottom of our hearts because without them all we wouldn't be where we are today!

Chiropractic Team...

Here is the team at the Chiropractic college: Sam, Romaine, Roman, Johan, Joachim, Brita. The amazing interns who are helping Jake, from chiropractic treatments to exercise rehab! they have produced a specific programme for Jake to follow, using different techniques for different muscle groups, to improve his muscle tone, circulation and movements.




2016 Update...

At last .. we have help!!!! and the help is Lauren and AJ... two absolutely fab girls who work at Jake's school and are now joining our crazy family! so now "Team Jake" is complete... although Jake does physio/gym at school we still need to be doing it at home too, to keep him going, but due to myself and Martyn working full time etc we just haven't the time... so now... thanks to the girls we have started a programme at home... and recently got the X N Flex fixed, as it broke, which is great for Jakes legs... so you can see in the pic Jake working out with his girls! and Jake also recently joined our local gym, the Littledown Centre, so AJ takes him there too.. and Jake is loving it as he loves working out. Can't thank the girls enough, they have, in the last few weeks of starting, made such a huge difference to all of us... so THANK YOU GIRLS!!!!! looking forward to all the adventures we are planning! bring it on!! woohooo!!

 
The New team members!

 
MUM AND DAD (April & Martyn) - The researchers etc etc!
 

Samuel - Sam is Jacob's brother... now 7 years old.... Sam goes everywhere with us and is totally involved with everything we do. He has been amazing through all of this.  We explained to Sam as best we could without frightening him what was happening to Jacob.  Sam took it totally onboard even at the tender age of 6 (then) and has been brilliant with Jacob.  Helping with his physio/treatments... playing and of course still fighting!! we keep our house as normal as possible!! Sam understands what Jacob can and can't do and helps him as much as he can... even early on Sam would help bath Jacob... and helps him to the loo etc!! Sam has started getting Jacob interested in his DS Nintendo again as up till recently Jacob hasn't been able to hold it... let alone play it... he still struggles playing but gives it a good try with Sam helping him.

 
David - As mentioned David is our healer/councillor/guru and the strength to help us on this journey.  David has been there to help us on the days where we were all shell-shocked and in a state of shock and disbelief. 
He is always there when we need him.  Jacob loves David and loves the healing.  Jacob also confides in David on how he is feeling etc and totally trusts David's opinion and Judgement.  Couldn't and wouldn't be without David.....EVER!!
 

Julie - David's lovely wife - like David, Julie has helped us all in so many ways and given us the courage to get through this - even on the low days with her calm and reassuring manner.  Her Yoga has totally helped Jacob and like David, Julie has become a great friend and even Tom their 4 year old... Jacob has taken a shine to.
 

Dr Perlman
 

Andre - Jacob's physiotherapist.
 

Eileen - Jacob's TA.
 

Rhiannon - Jacob's Occupational Therapist.
 

Linda - Linda's positiveness and caring manner has helped us all to understand what Jacob has and is going through, and is always down the end of a phone when we need her, also to pop in for a coffee and a catch up! When we speak to Linda she contantly reassures us on what is happening and why.

 
The Schools and Jacob's great mates!! - As said the amount of love and support we have had has been amazing and I dont know what we would have done if these 2 schools weren't involved!


Bettina and Christina - (ISST) The 2 great physiotherapists... these 2 worked so well with Jacob and us! they taught us all we needed to know... with more to come no doubt... Jacob thoroughly enjoyed working with Betina and Christina... they explained everything to us and were brilliant with Jacob... and also made sure that Sam wasnt left out either!!! we all had big hugs when we left in April! and cant wait to see them again in August.
 

Xcell Center - Wonderful, professional and lifesaving are the 3 things that spring to mind!! The key to all that has happened and still is happening! at this stage who knows... maybe the treatment for ALD for the future! we hope so!
 

Chris - Chris from A smile for a child... without his help with the fundraising who knows what we would have done!!!! He again is always on the end of the phone encouraging/supporting and helping us raise the funds we need!






Our Friends - Without this group of girls who first thought of fundraising as they were desperately trying to help... again who knows where we would be! they are amazing, they all have kids of there own! most of them are Jacob's mates! so how they find the time to do their own stuff, let alone all this fundraising!!! We are truly blessed!!!!
 

Nanny - Jacob's Nanny... (shown here with Jacob's aunts at the 1960s event) is always there when we need her... morning, noon and night... to help all of us!! she is our babysitter/personal shopper and anything else we need her for!! Again don't honestly know where we would be without her! Giving us all the love, help and support on a daily/hourly basis!!

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