British Heart Foundation

Celia's Page

Celia Chartres-Aris (Heloise Hoare & Harry Clements)

Celia Chartres-Aris (Heloise Hoare & Harry Clements)

My Story

Celia's Story

Celia Chartres-Aris has Loeys-Dietz Syndrome, a rare incurable genetic connective tissue condition which causes changes in the heart, blood vessels, bones, joints, skin, and internal organs.

She was diagnosed with LDS as a child and it has dictated her entire life since the very beginning. She now lives I entirely dependent on artificial nutrition through a central line into her veins and tubes into her organs so sustain her life due to multiple organ-failure.

Despite the odds against her, Celia has dedicated her life to helping others, as a multi-award winning Disabled Government special advisor, campaigner and lobbyist, researcher, policy designer and legal expert, founder and investor advocating for the improvement of Disability and health equity.

Two of the main symptoms of LDS are cardiovascular; Aneurysms (widening or dilation of arteries, particularly in the aortic root) and Arterial tortuosity (twisting or spiralled arteries). This means that LDS patients rely on regular scans and heart surgeries to stabilise their condition. 

Currently LDS has no cure, and cardiovascular symptoms are life-threatening, patients are being managed as best as they can. Due to the rarity of LDS urgent funding and research is therefore desperately needed to save as many lives as possible through early-diagnosis, access to specialists and innovative new surgeries which work with the genetic complications of LDS.

Celia will be ‘running’ the London marathon alongside her incredible ‘pushers’ Heloise Hoare and Harry Clements in a bright pink wheelchair dressed as a giant heart to raise awareness for LDS, heart conditions in young people, rare diseases, and to raise as much money as possible for the incredible work of BHF.

Please donate what you can, to save as many lives like Celia’s as possible.

The British Heart Foundation

The British Heart Foundation are the biggest funders of research into heart and circulatory diseases in Europe. They help find cures and treatments to give people more time with loved ones, shape policies and awareness and give people like me hope for the future.

For more information about BHF: https://www.bhf.org.uk

About The Event

The London Marathon has become an annual, inspiring and colourful fixture in the world’s sporting calendar since the inaugural race on 29 March 1981: a celebration of fun, fundraising and fancy dress.

Over the years more than a million people have completed the 26.2-mile course – which runs from Blackheath to The Mall, with a spectacular finish in front of Buckingham Palace, showcasing the very best that the capital city has to offer.

What’s more, these participants have raised over a billion pounds for charity and there have been countless amazing tales of human achievement throughout the event’s history – living up to its aim of helping participants ‘to have fun, and provide some happiness and sense of achievement in a troubled world’.

British Heart Foundation

Raising for:

British Heart Foundation
171%

Funded

  • Target
    £5,000
  • Raised so far
    £8,561
  • Number of donors
    42

My Story

Celia's Story

Celia Chartres-Aris has Loeys-Dietz Syndrome, a rare incurable genetic connective tissue condition which causes changes in the heart, blood vessels, bones, joints, skin, and internal organs.

She was diagnosed with LDS as a child and it has dictated her entire life since the very beginning. She now lives I entirely dependent on artificial nutrition through a central line into her veins and tubes into her organs so sustain her life due to multiple organ-failure.

Despite the odds against her, Celia has dedicated her life to helping others, as a multi-award winning Disabled Government special advisor, campaigner and lobbyist, researcher, policy designer and legal expert, founder and investor advocating for the improvement of Disability and health equity.

Two of the main symptoms of LDS are cardiovascular; Aneurysms (widening or dilation of arteries, particularly in the aortic root) and Arterial tortuosity (twisting or spiralled arteries). This means that LDS patients rely on regular scans and heart surgeries to stabilise their condition. 

Currently LDS has no cure, and cardiovascular symptoms are life-threatening, patients are being managed as best as they can. Due to the rarity of LDS urgent funding and research is therefore desperately needed to save as many lives as possible through early-diagnosis, access to specialists and innovative new surgeries which work with the genetic complications of LDS.

Celia will be ‘running’ the London marathon alongside her incredible ‘pushers’ Heloise Hoare and Harry Clements in a bright pink wheelchair dressed as a giant heart to raise awareness for LDS, heart conditions in young people, rare diseases, and to raise as much money as possible for the incredible work of BHF.

Please donate what you can, to save as many lives like Celia’s as possible.

The British Heart Foundation

The British Heart Foundation are the biggest funders of research into heart and circulatory diseases in Europe. They help find cures and treatments to give people more time with loved ones, shape policies and awareness and give people like me hope for the future.

For more information about BHF: https://www.bhf.org.uk

About The Event

The London Marathon has become an annual, inspiring and colourful fixture in the world’s sporting calendar since the inaugural race on 29 March 1981: a celebration of fun, fundraising and fancy dress.

Over the years more than a million people have completed the 26.2-mile course – which runs from Blackheath to The Mall, with a spectacular finish in front of Buckingham Palace, showcasing the very best that the capital city has to offer.

What’s more, these participants have raised over a billion pounds for charity and there have been countless amazing tales of human achievement throughout the event’s history – living up to its aim of helping participants ‘to have fun, and provide some happiness and sense of achievement in a troubled world’.