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BATTLING AGAINST BATTEN
we need you!
BATTLING AGAINST BATTEN
This is Ollie or Ollie Bobs as his Mummy calls him.
We are Ollie's Army and we need YOU
What is Batten Disease?
Ollie is a gorgeous, happy and very smiley 4 year old little boy; he has 3 siblings who he loves to play with, they especially love football and he is a huge Liverpool supporter! Helicopters, Fire Engines and crisps are some of his favourite things but, like all little boys, he loves cuddles with his Mummy and Daddy the most.
Ollie’s Mummy and Daddy, Mike and Lucy, are inspirational in the brave way they are coming to terms with this heart-breaking diagnosis and have formed a group in honour of their little soldier, called Ollie’s Army, through which they want to share their journey, gain much needed support and raise awareness of this awful condition.
We want you to hear their story, to join Ollie’s Army and to help raise as much money as we can to support this family. All funds raised will go towards Ollie’s ongoing care, the purchase of specialist equipment and the inevitable home alterations needed as well as helping to fund future research into Batten Disease, in the hope that one day a cure will be found.
Despite the smiles, however, Ollie is a very poorly little boy and he would like you to read about it in his very brave Mummy’s own words:
“On Friday the 13th of February we were given the devastating news that Ollie has a very rare genetic illness called Late-infantile Batten Disease. It is estimated that there are only 30 - 50 children in the UK with this rare genetic condition. This cruel disease will rob our beautiful baby boy of the ability to walk, talk, swallow, play and see. batten disease is always fatal and children normally pass away between the ages of 6 and 12 years. There is currently no cure for this disease! As a family we are completely devastated and are trying to come to terms with this awful news. We are determined to do as much as we can to make sure that Ollie enjoys life as much as possible”
Monies raised will also be used to help achieve the ‘Wishlist’ of exciting experiences and adventures the family would like to enjoy together whilst they are still able to, so they can create treasured memories, spend precious time together and make every single second of Ollie’s life full of the love and happiness, he deserves, as he is faced with his battle. We just wish this was a battle he could win.
Thank you for visiting this site, for your support and for taking the time to read about this beautiful, smiley little boy and his incredible family.