Ollie who was once a happy, chatty, active little boy suffers from CNL2 Batten Disease that robs seemingly healthy children of their abilities one by one, and causes uncontrollable seizures until ultimately taking their life. Ollie can no longer walk, talk and is fed by a tube going directly into his stomach.
Life expectancy is between six and twelve years. Amelia and her older brother Ollie are both battling this terrible disease.
Ollie has been receiving an enzyme therapy treatment at Great Ormond Street Hospital in London for the past three years on the grounds of compassionate use which has improved his quality of life dramatically. This treatment has shown evidence in slowing down the progression of the disease but sadly it is not a cure.
Thankfully Amelia was able to start the enzyme therapy treatment at a young age before the symptoms of the disease took hold. Being one of the youngest children in the world to receive this treatment Amelia’s future is unknown. At the age of seven Amelia is still able to walk, talk, eat and is now four years seizure free.
However this treatment does not prevent the loss of eyesight.
The family need to raise £250,000 to enable professionals at Great Ormond Street Hospital in London move forward in setting up a new clinical trial/compassionate use program to use enzyme therapy directly into the eye of children with CNL2 Batten Disease. If successful, this treatment could slow or even prevent the loss of eyesight in children battling Battens Disease.
For the past few months a group of Ollie and Amelia’s Daddy’s (Mike) friends have been working hard on a fundraising project, what they have achieved has never been done before!
These guys so desperately want to save Amelia from the same fate as her big brother Ollie by saving her eyesight. Collaborating together they have been able to put together a unbelievable raffle, using their skills and contacts.
All funds raised from this raffle will go towards our campaign to save the eye sight of children battling from CNL2 Batten Disease and save little 7 year old Amelia’s eyesight.
BIG JOBS by Big Hearts raffle prizes are as follows, and there is only 2000 tickets available for each prize;
An Amazing Home Extension worth up to £40,000
A Brand New Kitchen and Installation worth up to £10,000
A Brand New Bathroom and Installation worth up to £5,000
A Brand New Driveway or Patio worth up to £5,000
To buy tickets and for more information please use the link below:
Please enter and share far and wide with all your friends, families and colleagues. ♥️