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...


Medical and physiotherapy - continued
 
COSTS
 
Unfortunately all this costs... as it is not available on the NHS... £10,000 approx for the Stem Cell treatment and £6,000 for the Physio! a lot of money but well worth it... we have been doing a lot of fundraising! I say we... our wonderful friends and both the schools got their heads together and started having ideas for fundraising... and they still haven't stopped... please look at the fundraising events that they have organised for us and how much they have helped us raise!

This, together with Chris from www.asmileforachild.co.uk - Chris runs his own childrens charity and is great friends with my uncle... he has helped us so much as companies, schools etc need a charity with a registered charity number in order to donate and Chris offered his services to help us fundraise! we have a Just Giving site - www.justgiving.com/trustforjacob you can see on there how much has been raised and what events we have done. 

The community, our great friends. the 2 schools and Chris have been our lifeline... giving us all the support and love we need... and of course the money to help get Jacob better... there is more info on the events page to help give ideas etc as it is a lot of money to find... and in Jacob's case he may have another stem cell treatment and definitely more physio.
 
WHERE TO STAY
  
We thought we would mention this also... with everything else you need to think about you need to stay somewhere when you are in Germany... A few years ago we holidayed in Holland and found this amazing place... like our center parks with its own bungalows etc in a little village called Overloon. 

The site has an indoor pool/bowling/restaurants/ soft kids play area... which, after Jacob's Lumbar puncture when we went back to where we were staying, Jacob went in the play area for 30 mins!!! couldn't believe after what he went though! but the Lumbar Puncture hardly effected him at all... very low key and hardly any risks... we did check all of this before making the decision. The site is completly child and disabled friendly! who would have known 2 years ago we would be going back there is a totally different situation! www.landal.com If you click on the link and then on the home page you will see where to search... click the Netherlands and then De Vers... that is the name of the site. 

De Vers is approx 50 mins from the Xcell center in a village called overloon, Overloon have a great tank museum/zoo/shops/restaurants and supermarket which you can either walk or drive to.  We decided as a family to return there mostly because we loved it but also we wanted to try and have a holiday! I know this might sound bizarre... but we wanted a place to relax and chill out... and have family time as well as the treatment for Jacob... this place has everything you need and the staff speak English and are so friendly and supportive. 

We had a disabled bungalow with its own Sauna and Whirlpool bath... the kids loved it... we tried to go with the attitude of having a good time as well... positive happy thoughts and all that! and it worked... we had a great time and Jacob recovered so quickly because we were not in a stressed out environment... we also didn't want him worrying about the treatment, and the days when we weren't at the Xcell center we went to the tank museum and shopped! there is also a lovely Zoo nearby.... loads to do... even in Feb in the snow! which was when we went! it was lovely!
 
So the De vers was great as close enough to the Xcell center.... but for the ISST it is too far.  The ISST sorted out the accommodation for us...
It was in UNNA in Germany 5 mins from the ISST www.zimmer-unna.de Simona and Oliver own these apartments... lovely people, and the apartment is only a 5-10 walk to the ISST... it was perfect for what we needed - a lovely apartment.  Unna is a very pretty city and when we had time off we walked into the city.... again 5 minute walk... Unna has loads of shops/cafes/restaurants/supermarkets/banks etc... everything you need really... the ISST can sort for you or you can get in touch with Simona/Oliver through their website.
 
SOME OTHER TIPS
 
We flew with BA... they were fantastic... the kids even sat in the cockpit!!! they totally looked after us, it was the first time we had flown since Jacob became ill and we were quietly worried... but I have to say the way they looked after us right from when we got to Heathrow to when we left Dusseldorf airport... we wouldn't fly with another airline again! Totally looked after.
 
We hired a car as well... as we like to be independant and do our own thing... booked through www.economycarrentals.com the agent at Dusseldorf airport were great Sixt... speak great English also!
 
If there is anything else you need to know please email... we will help as much as possible.
 
BENEFITS
 
Thought we would mention what benefits you may be entitled to also... Again we had to research this ourselves! go to www.direct.gov.uk - we get DLA (Disability Living allowance) Carers allowance and have just got a car through the mobility scheme... this will depend on symptoms... as Jacob can't walk too far without his wheelchair we could have the car! Family tax credit... worth looking at the site as you may be entitled to more.  Any help with the costs as the supplements and treatments we are doing all cost money!

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