Weʼre raising £250,000 to save the eyesight of children with CLN2 Battens Disease.
- Elvington Airfield, York
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Imagine once being able to see the world but slowly that sight was ripped away from you plunging you into total darkness.
Imagine the fear and confusion you would feel not understanding what was happening, being powerless to stop the darkness from creeping in.
Now imagine being only seven years old and this happening, imagine no longer being able to see your toys, your friends or the faces of your mummy and daddy.
This is what happened to Ollie Carroll who is now nine years old.
Ollie has a ultra rare genetic neurodegenerative condition called Batten Disease.
Batten Disease robs seemingly healthy children of their abilities one by one and causes uncontrollable seizures until ultimately taking their life.
Life expectancy is between six and twelve years.
Ollie who was once a happy, chatty active little boy can now no longer walk, talk and is fed by a tube going directly into his stomach.
Thankfully 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.
In September 2019 his parents won the Battle to get this treatment funded by NHS England and made available for all children with CNL2 Batten Disease England.
Heartbreakingly, Ollie’s younger sister Amelia has also been diagnosed with the same devastating condition.
Thankfully Amelia was able to start the enzyme treatment at a young age before the symptoms of 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 almost four years seizure free.
However this treatment does not prevent the loss of eye sight. It seems that the drug which is administered every other week by a four hour brain infusion does not get across the blood brain barrier.
Right now Amelia still has her sight but sadly time is not on her side.
Amelia’s parents, Mike and Lucy have been working tirelessly with professionals from Great Ormond Street Hospital. They are now in a position where doctors are prepared to do an enzyme therapy trial on patients to prevent the loss of eye sight in children with CNL2 Batten Disease.
Mike and Lucy were not able to save their sons eye sight but now they have been given a fighting chance to prevent the same happening to their beautiful little girl but this comes at a cost.
It is estimated that the Carroll’s will need to raise £250000 to fund this trial which will not only help Amelia but also other children with CNL2 Batten Disease in England.
I Carl from The Carl Thomas Project have dedicated 10 years of my life towards raising £1 million for various charities by completing a crazy challenge each year.
This will be my third and biggest challenge.
I will be attempting to set a new Guinness World Record by running a marathon whilst pulling an aeroplane.
This event will take place on the 16th September at Elvington Airfield in York over the period of 24 hours.
The whole event will be live streamed across social media pages.
We are now in a race against time.
Please follow me at
All funds raised from this challenge will go to Ollie’s Army Battling Against Battens to fund a clinical trial at Great Ormond Street Hospital to prevent the loss of vision in children with CNL2 Batten Disease.
Please donate what you can and help these beautiful innocent children.
Myself and the Carroll’s would like to thank you for your support .
In 24 hours Carl Thomas will attempt to set a new world record by running a marathon pulling a plane! he is raising money for Ollies Army Battling Against Batterns
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