This is my nephew Theo Koa Skye. I haven't met him yet and won't be able to for a very long time yet, he's still in hospital, but he is already a legend and proving an inspiration to everyone in our family and we couldn't be prouder of him!

Theo was born on the 3rd of March, a little earlier than expected. He's had an incredibly tough time, so have his parents!! He's had lots of tests and after some time, has been diagnosed with having the incredibly rare condition CCHS.

Like many people, we grow up with the dream of living life healthily, find a partner and if we're lucky enough, have children. Life doesn't always work like wed hope, some struggle for this dream, some are unable and unfortunately there are many, many silent and sad stories around the subject. Some people are born with added life long obstacles which don't seem fair especially in children! Theos been making huge but small steps, been up against it and will need a lot of help on the bumpy road ahead. But he's improving, getting stronger and despite having the heart of a lion, couldn't continue do this without support - machines, medicines and the incredible doctors, nurses and all involved with the amazing NHS!!

In many ways Theo has won the lottery of life, having incredibly caring, committed and lovely parents. He won't lack for love as he will have it in spades from them and his wider family. We want Theo to live his life to its fullest capacity in whatever form he's able to! What would be great is if we can raise awareness and some funds to support organisations helping children and their families with life affecting conditions such as CCHS.

In June, I'll be running the Cheltenham half marathon on June 12th and along with a friend am going to use to try to raise money for Noah's arc children charity who are actively helping children like Theo and supporting their families! Here's what they do!

https://noahsarkcharity.org

The run itself really isn't important, irrelevant. Im carrying a bit of timber these days, have a wrecked knee, Fiona will tell u I’m 15 years past ny best, but will be doing it in support of a terrific charity. I'd run through a wall for my brother, but that would be a hell of a lot easier as I'd prob only need a 5m run up for it but we'll give it a go! 😂

Any help, as little or as much as you can afford would be great and go a long way to supporting and continuing the work of Noah's arc! If you are able to please follow the link below,

://www.justgiving.com/fundraising/gavin-skye2?utm_source=sms&utm_medium=fundraising&utm_content=gavin-skye2&utm_campaign=pfp-sms&utm_term=a41850cdc6f54f1fa95bf7705876584a

Diolch/Cheers x