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Kelly Shelton

CAF Rail's Hell up North Page

CAF Rail team running 'Hell up North 1/2 Marathon' for Just for Kic@x because in support of Ollies Army

113 %
£227.00
raised of £200 target
by 13 supporters
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  • Team members: CAF Rail UK Team members , Katarzyna Gladysz, Bart Kuka, Kelly Shelton , James Harris , Anna McCall , Gordon Gillies , Greg Hunter
  • Event: Hell up North, 13 Oct 2018

Just for Kic@x

We provide xmas presents for kids in care to enhance their time while in social care

Charity Registration No. 1156894

Story

Thank you for visiting our just giving page and thank you to Just for Kic@x for allowing Ollies Army to use their charity for donations.

PLEASE REFERENCE OLLIES ARMY WHEN MAKING A DONATION OR YOUR DONATION WILL NOT GO TO OLLIES ARMY

What are we doing : 

We have decided to take up the challenge of 'Hell up North' which is a half marathon through Delamere Forrest on the 13th October, this is no normal half marathon, we will be running through waist deep bogs, climbing near vertical muddy slopes and facing the dreaded 'Lucifa's Lido' which is a chest deep haul through boggy  freezing cold water. check out hellrunner.co.uk/hellupnorth

We have a very mixed bunch of 'athletes' taking part , from ex military and an ironman , to regular gym goers and also those with a phobias of the gym or exercise of any nature with the fitness level and energy of a sloth.

The Charity: 

Our chosen Charity,  Ollies Army , supports a local family the Carroll's , who received the devastating news that their two youngest children Ollie and Amelia have Battens Disease,  CLN2 late infantile disease to be exact. It is a fatal disease of the nervous system , Children with Battens are unable to make an enzyme that is responsible for eliminating waste that build up in the brain. over time children suffer worsening seizures and progressive loss of sight and motor skills , eventually they will become blind , immobile , tube fed and unable to communicate. There is no cure for this evil disease. 

One of our Team members, Kelly,  went to school with Ollie and Amelia's dad Mike , and as many others, follows the story and progress of Ollie and Amelia very closely both on social and general media. Whilst there is no cure for this disease a pioneering treatment has given a new lease of life to the two youngsters and along with their family and the BDFA ( Battens Disease Family Association)  they are campaigning for it to be funded in the UK. unfortunately recently the National Institute for Health and Care Excellence ( NICE) have made a recommendation that the NHS England does not  fund this treatment in the UK even though it is funded elsewhere in the world. As mentioned earlier there is no cure , this treatment however , dramatically slows the disease down , Ollie and Amelia are living proof of this , without the treatment Ollie at the age of 4 had lost his ability to walk and was loosing the ability to talk , where as his sister at the age of 4 with the treatment hadn't had any seizures for over 12 months, she is learning new things , she goes dancing , swimming and is generally putting 2 fingers up at Battens Disease. whilst receiving this treatment as part of an extended medical trial both children have been able to attend a mainstream school. 

The family had hoped that NICE would approve funding via the NHS , unfortunate NICE have questioned the long term effectiveness of the treatment and have not approved the funding . the Carroll's, along with other families whose children suffer with this disease and the BDFA are fighting to get this decision over turned, as the cost of the treatment is £500,000 per child per year. 

Following Ollie's Army you can see there are good days and bad days for the family , but all money raised goes towards making more good days and also towards helping them campaign for the treatment that will prolong their children's lives. 

Please help us to help them , even a small donation will go a long way. 

for more information please visit 

Olliesarmy.co.uk 

and also 

bdfa-uk.org.uk

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