I have been running and entering various events for 14 years and this year I was lucky to have won a place in the ballot for the London marathon. So for this event I would like to help raise money for a charity close to my heart.

I have close connections with the Proteus Syndrome UK charity as I have known a family for many years that has been living with the disease. The problems and anguish that it presents for family life and a very courageous young man that has overcome many hurdles in his life.

I have known Jordan since he was eight years old, I remember his mum telling me once that he hadn't wanted to wake her one night, to ask to have his pain relieving medication despite being in excruciating pain. He has grown into a handsome clever young man and despite his disability due to proteus he has played football, basketball, attended college and then gaining a first in his degree at University. He is kind and always gracious with a beautiful smile. He made a brave decision at the age of 15 to have his legs amputated, enabling him more quality of life. He then donated his legs to stem cell research and since then scientists have discovered the gene that is responsible for Proteus. So now for future generations the gene responsible may possibly be eradicated and may also help with the Proteus suffers today.

Proteus syndrome is a rare, genetic condition. It is very variable in nature but can be disabling and it is life threatening. It is the condition that doctors now believe affect Joseph Merrick, the so called Elephant Man.

The syndrome is extremely progressive in nature and can affect any part of the body, including bones, organs, skin and the brain.

The charity provides the following:

Emotional support and putting families in touch with each other to alleviate the feelings of isolation

Family weekends

Newsletters

Grants to improve quality of life including help with mobility aids and holidays

For more information see Proteus Syndrome Foundation UK

www.proteus-syndrome.org.uk

* You can also read Jordan's story on the above website*