Penny Stewart of Blyth is a bright bubbly 5 year old with the most beautiful smile and infectious giggle. Penny would love nothing more than to be outside shouting and running about and playing with toys.

Sadly Penny can't as a rare genetic condition Rett Syndrome has robbed her of the ability to talk, walk, use her hands and left her with a lifetime of struggles, seizures and surgeries.

Penny was a healthy girl just narrowly missing her milestones until at the age of 2 almost overnight she lost the ability to talk and use her hands, a year later she would lose the ability to walk. After 2 years of medical investigations genetic
testing found that Penny has a condition known as Rett Syndrome.

Rett syndrome is a rare neurological disorder affecting around 1500 children in the UK and 300,000 globally. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. As this is on the X chromosome 99% of cases are female as males rarely survive as they only have 1 X chromosome.

People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.

To raise awareness of Rett Syndrome and fundraise for reverse rett a UK charity funding research into treating Rett Syndrome I'll be taking on a series of challenges in 2019

I plan to run 500 mile over the year, complete 10 5k park runs,  GNR as well as dozens of other challenges that people propose to him.

I've already had my legs waxed, taken part in a boxing day dip and ran over 300 mile so far

I'll be taking on every challenge and every mile as my purple superhero alter ego Rettman donning a purple afro, mask and cape much to the comedic delight of the many throughout Blyth and the surrounding areas that have come across him on one of his runs.

Something that Ben started has been quickly embraced by the whole family with his eldest daughters Paige and Poppy joining him on runs and challenges with Poppy in her own superhero outfit "Rettgirl"

You can follow the families exploits to raise awareness of Rett Syndrome on their Facebook page “rettman”

You can read more about Rett Syndrome at https://www.reverserett.org.uk/what-is-rett-syndrome/

Every £500 raised I'll have to complete a forfeit as Rettman.