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Carl Thomas

Carl Thomas is crowdfunding

0%
£1,710
raised of £250,000 target by 41 supporters

Weʼre raising £250,000 to help save the eyesight of children with CLN2 Battens Disease

Elvington airfield, York

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Story

The Journey

I am Carl Thomas, multi world kick boxing champion and coach in Stockport.

In July this year I will attempt to set a new world record to support Ollies Army Battling Against Battens to provide the funding needed for a new treatment at Great Ormond Street Hospital that could save the eyesight of Children with CLN2 Batten disease.

This challenge will have four consecutive parts: A 250 mile bike ride; a marathon run; a 5 mile swim and a heavy vehicle pull over a set length. To make the challenge harder I will be wearing a weighted vest, apart from the swim.

The challenge will start at Great Ormond Street Children's Hospital and finish at 4pm on 17th July at Elvington Airfield, York.

At the same time other people across the country will be taking part in their own particular challenge, which are all scheduled to finish at the same time, 4pm at Elvington Airfield, York, Saturday 17th July for the grand finish.

I want to involve as many people as possible in this event, each person facing their own particular challenge whilst contributing to the main challenge of raising the full amount needed for the treatment.

There will be live coverage of all these events on social media.

Anyone wanting to join 'The Journey' can contact me at

https://www.facebook.com/thecarlthomasproject/

https://www.carlthomasproject.com/

All donations to be made to this JustGiving page.

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You can still make a donation if you are not able to take part directly.

Thank you, Carl Thomas.

Thank you from Ollies Army Battling Against Battens

https://www.facebook.com/olliesarmybattlingagainstbattens/

We are so grateful to everyone who donates and by doing so you are becoming apart of something huge and will be helping to change the future of children with CNL2 Batten Disease.

We thank you from the bottom of our hearts.

BACKGROUND

'The Journey' is fundraising for Ollie’s Army Battling Against Battens, which supports two siblings Ollie and Amelia Carroll from Cheshire who have been diagnosed with the Ultra rare CNL2 Batten Disease.

https://www.olliesarmy.co.uk/

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 replacement therapy treatment at Great Ormond Street Hospital in London for the past four 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 along with others 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 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/compassionate use program which will not only help Amelia but also other children with CNL2 Batten Disease in England.

In the unlikely event the trial does not go ahead for whatever reason or in the event that we exceed the amount required for the trial/compassionate use program, funds will be used to improve Ollie and Amelia quality of life, providing equipment, making memories, or donated into further research/therapies in Batten Disease.

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Carl Thomas

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    5 months ago

    Carl Thomas started crowdfunding

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    Page last updated on: 6/14/2021 07.38

    Supporters

    41

    • Anonymous

      Anonymous

      Jun 14, 2021

    • Anonymous

      Anonymous

      Jun 7, 2021

      £20.00

    • Doreen Martin

      Doreen Martin

      Jun 2, 2021

      £50.00

    • Jo and Colin

      Jo and Colin

      May 30, 2021

      Good luck to Gary Thacker and his team. Well done everybody taking part. Jo and Colin

      £30.00

    • Dianne and Phil Ward

      Dianne and Phil Ward

      May 29, 2021

      Good Luck Steve Wood and everyone in your challenge on the 17th July. 🙏🏻 For Ollie and Amelia

      £20.00

    • Rosalind Phillips

      Rosalind Phillips

      May 1, 2021

      Everyone deserves our support You got this guys I know your be amazingLove you bro 😘

      £10.00

    • Dave wilson

      Dave wilson

      Apr 29, 2021

      Good luck Darren greaves on the challenge and well done on the fantastic work your doing for charity 💙

      £10.00

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    About the fundraiser
    Carl Thomas

    Carl Thomas

    Elvington airfield, York

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