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...


Victoria Education Centre and Sports College

Jacob as of April 2011 started at Victoria Education Centre and Sports College. The school is for kids up to the age of 19 years old. The school deal with all sorts of disabilities and I have to say its AMAZING! We all decided - all being Stourfield School, Education Specialist, us as parents and Jacob (he did a half day there to see if he liked it and never turned back) that Stourfield being a mainstream school couldn't cater for all Jacob's needs, as much as Stourfield didn't want to let him go, and us not wanting him to go, it was the right decision for Jacob. I can't tell you how many of us cried on his last day! The kids all signed, with pics, a year book for him and I think I cried for a week! Even now it brings tears to my eyes if I pick it up! but with what Jacob has it was too much for Stourfield to cope with and he needed specialist help. Thankfully Sam, our youngest, is still at Stourfield... so I still bless them with my presence! and take Jake in to see them all too. Without their support/love and understanding I dont know how we would have coped! And all the help with the fundraising to get Jacob the stem cell treatment he needed. Thank you isnt a big enough word to how I feel about Stourfield... but it was time for Jacob to move on...

Jacob at Victoria now has his own Occupational Therapist, Physiotherapist, Speech and Language Therapist and his own Teaching Assistant. What more could we ask for! (pics of these special people are under the What we are doing section).

Jacob covers all lessons as per normal, as well as sessions for his Speech/Physio and OT life skills. He does wheelchair football, table cricket, gym, PE, Games etc etc. He couldn't do these things at Stourfield, so going to Victoria has opened doors for him... and us to. The school is so supportive and are always there for us, their knowledge and advice is invaluable. They have nurses on site as well as a school doctor. He attends full time and on a Friday night does youth club, as well as adventure days in the school hols (even does canoeing/sailing and other water sports!) and even sleeps over! They cover EVERYTHING, and more, that he and us need! He swims in the hydro pool and the school are soon to be building a new pool... thanks to the Sparkle Appeal. Princess Anne is even the Patron of the school and actually visited the school recently... Their vision is of a transformed society where disabled and disadvantaged people can live life to the full.

I could go on and on about this school but if you click on the link http://www.livability.org.uk/services/education/ it speaks for itself. The best bit is, it is even practically on our doorstep! but not everyone lives near... so they have a brilliant boarding facility and the kids stay and board and attend school Mon-Fri. They recently had their sports day and I have never seen a sports day like it! (Pics are on the general gallery) it bought tears to our eyes! You will never see so many staff go to so much effort and every time I go there (everyday! as I take Jake to school) its rare that you don't see the children smiling and laughing! it truly is such an inspirational place to be!

So we, as a family, have the best of both worlds... Jacob at Victoria and Sam at Stourfield. I have to say we are so lucky as parents, to have 2 amazing schools for our kids and I thank them both from the bottom of our hearts.


Stourfield School

Jacob used to go to Stourfield Junior school and what an amazing school this is.  After Jacob got diagnosed in Oct 2009 he deteriorated rapidly and by Nov was in a wheelchair, part time to missing school. The school took him out of mainstream class and he attended a nurture group where they totally nurtured him, looked after his every need, helped him and mothered him, it still brings tears to my eyes when I think about what school has done for Jacob. He was really poorly by Dec and could barely eat/sit up/talk etc and they wouldnt transfer him to a special needs school... they wanted him with them. 

After Xmas Jacob started showing little improvements and was doing part time, 2-3 hours a day and slowly built up the time he spent there and just before the easter hols 2010 he was back at school FULL TIME! and also back in his class room with all his old pals! and hasnt been in nurture group since... bar having his lunch in there as he still doesn't go out to play as hates his wheelchair being at school! 

Looking back the state Jacob was in he should have been in a special school but with all the love/support and attention they gave Jacob they almost nurtured him back to class.  The first day in class I took him in and all his class mates stood up and started cheering and clapping... it was so overwelming... and lovely... and the support he gets from his mates is amazing... as you can see in the picture... they all love Jacob being back and getting back to his normal self.

The Infant school have also played a major part as our other son Sam is there and Jacob was previously, and the amount of love and support from both schools and all the fund raising they have done for us (please see fund raising page) is unbelievable, as not only did Martyn and I have to cope with what was happening with Jacob so did his then 6 year old brother... it was very frightening for all of us and the Infant school was equally there for Sam as the Juniors were for jacob. 

Both the schools have helped us all as a family and I honestly dont know where we would be without them both. They rushed Jacob's statement through in 3 months so he know has 2 teaching assistants.... one in the morning and one in the afternoon.  Jacob is even going on school trips again.... all be it with the wheelchair... but determined to walk as much as he can.

Between these 2 schools, and the wonderful friends I have made there since the kids started school, we have a fantastic support system, with all the help/love and support you need at a time like this... and helping raising funds for the treatments... please see the events page as to what these 2 schools have done for us together with the local community...


View Jacob's recent Echo story here.

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