Community Heroes Winners – Ollie’s Army
This week’s Love Hearts Community Heroes are Ollie’s Army, nominated by Mandy Oldham.
These are the words of Lucy Carroll, amazing mum to the brave and super smiley Ollie and Amelia;
Batten Disease is an extremely rare genetic neurodegenerative disease. Children with CNL2 Batten Disease are born completely healthy, hitting all their milestones until around the age of three when symptoms of the disease start to appear. The first symptoms tend to be a speech delay and clumsiness. These symptoms tend to be missed by doctors as parents are often told their children will catch up.
Seizures then start in the children which can be very difficult to control. Over the next year children will continue to lose all their abilities including motor skills, such as walking and sitting up, their ability to talk and swallow, resulting in needed a feeding tube directly into their stomach.
By the age of 5-6 years children become completely dependent on their parents/carers. Life expectancy is just 6-12 years. There is currently no cure or treatment available in the UK.
Ollie and Amelia where diagnosed with Batten Disease in early 2015. At that moment our lives were completely blown apart. Our children were dying.
We set up Ollie’s Army to raise the much-needed awareness of a disease that was so horrific yet no one had heard of it, not even our doctors.
Since setting up Ollie’s Army we have had the continued support of our family, friends and our local community. As well as raising funds for adaptations to our home, equipment for Ollie and Amelia we have also raised funds that have gone directly into research in the hope that one day a cure will be found for future children with Batten Disease. Sadly, we know that this will come too late for our own children.
Thank you so much for picking Ollie’s Army as winner of your community hero awards. We were surprised to hear that we had won this award, it was such uplifting news at the heart of some hard times for us as a family.
We are so proud of our children and the little inspirations which they have become. They give us strength not only to carry on with day to day life but also to raise awareness of this incredibly rare disease and help make a difference to other families who are also battling battens.
If you would like to learn more about Ollie’s Army or Batten disease please visit http://olliesarmy.co.uk/ or on Facebook https://m.facebook.com/olliesarmybattlingagainstbattens/
One of our fantastic Heroes Hampers is on its way to Ollie’s Army – Congratulations, you are true Community Heroes!