EPIC MAN 70.3 Mark Jordan and Lee

Do you want to join me in making a difference? I'm raising money in aid of CYSTINOSIS FOUNDATION OF THE UK and every donation will help. Thank you in advance for your contribution to this cause that means so much to me.

More information about CYSTINOSIS FOUNDATION OF THE UK: Cystinosis is a rare disease that causes excess cystine to build up in many organs of the body. This causes a variety of symptoms including kidney failure, muscle wastage, hypothyroidism and photophobia.

Cystinosis Foundation UK provides support to anyone diagnosed with cystinosis, plus their family and friends. We also fund research into much needed better treatments, as well as raise awareness about the condition by organising conferences and by publishing information on our website and social media.

Mark, Lee and Jordan will be completing the Epic Man 70.3 Triathlon on Sunday 23rd July consisting of 1.2mile swim in Ulls Water Lake a 56 mile bike ride followed by a 13.1 mile run.

This charity is close to our hearts ❤️ our close friend wrote:

We feel we need to share our news about Eddie as it is not going away, on the 2nd September he was diagnosed with a very rare disease called Cystinosis along with Falcone Syndrome. There is no cure and something we are managing with 7 different medications given periodically in the day and through the night through an NG tube.

We have been in Manchester Childrens Hospital for a number of weeks but are now home and settling into a challenging regime. He’s a little hero who has smiled throughout every test and challenge. He’s been Ward 77’s favourite patient making an impression on all the staff with his cheeky smile and big waves. We couldn’t be more proud of him.

With regular check ups and his treatment we as a family will live a normal life the best we can, and can’t thank the combination of his GP and the specialists enough for spotting at an early stage.

We appreciate the huge support we have had off our families and friends and thank everyone for the kind messages.

Cystinosis is rare and the knowledge and funding isn’t as prominent as other diseases, and we hope to contribute to change this in the future.

If you can’t donate please share and spread awareness ❤️❤️