In April I’ll be running the London Marathon for Rare Disease UK on behalf of Jack Buchanan.

Jack suffers from Tricho-hepato-enteric syndrome, an extremely rare and life limiting condition which typically presents in the first month of life and results in a weakened immune system, abnormalities of organs, and failure to thrive. Most infants don’t survive beyond 5 years of age.

Jack is 19 years old and the only adult in the UK with this syndrome. There are less than 100 reported cases worldwide and the disease prevalence is one in a million.

At times, navigating through this journey has been immensely challenging both physically but especially mentally for the entire family. Jack has required years of hospital interventions, countless operations and procedures, affecting his quality of life and education.

Jack has more emotional resilience than most of us can even appreciate and I am in awe of him and his family’s ability to endure his daily healthcare routine which enables him to lead a life as close to ‘normality’ as possible.

At the time of writing this Jack is currently in hospital having battled an unknown infection for 6 weeks now from his hospital bed. Doctors continue to seek an answer in order to get Jack back home again to enjoy the rest of Summer and also to attend his mum, Jaime’s upcoming wedding to her partner Dave.

There is no charity specific to Jacks condition as it’s so rare, and so Jack has requested that I raise funds for Rare Disease UK in an effort to raise awareness of rare diseases.

I have had the pleasure of 23yrs of friendship with Jacks mother, Jaime. Between my marathon training and Jaime’s fundraising skills, we’re aiming to raise £100 per mile!

Jack, Jaime & I would be very grateful if you could consider sponsoring us over the coming months. My training will commence in September and my progress will be shared.

Many, many thanks 🙏☺️❤️