Running for Jack
Jack lives with Tricho Hepato Enteric Syndrome, a rare genetic condition that doesn’t have a dedicated support group or charity. A close family friend of Jack’s, Sarah, ran the London Marathon in 2024 to raise money for Rare Disease UK. Jack shares their fundraising journey and why they chose our charity to support.
I’m Jack, a 19-year old lad from Bristol. Unfortunately I live with an incredibly rare genetic condition called Tricho Hepato Enteric Syndrome. Whilst it’s been present since birth it wasn’t until 5 July 2012 that I was diagnosed in Birmingham by Dr Jane Hartley.
Last summer a close family friend of mine, Sarah, approached me saying she was running the London Marathon and asking what charity I would like her to raise money for to help raise awareness for my condition as I was in the midst of an 8-week hospital stay at the time. Naturally my first pick was Rare Disease UK as I’ve followed their work for a while now, as well as celebrating Rare Disease Day every year since my diagnosis 12 years ago.
Sarah promptly began her training and the sponsorships started to roll in over the following months. Me and my Mum, Jaime, organised 3 raffles around Christmas and Rare Disease Day to help raise extra funds as well as give people some lovely treats if and when they won.
Our initial aim was to raise £2,600 equating to £100 for every mile Sarah would run as part of the marathon. However we were able to smash this target and ended up raising £4,500 (including gift aid) for Rare Disease UK. This has felt like an absolutely incredible achievement for us and has hopefully helped to raise awareness for the lesser known health conditions and in particular Tricho Hepato Enteric Syndrome as there are less than 100 people worldwide with this condition and I am the only adult in the UK to suffer from it.
Sarah ended up completing the marathon in 4 hours and 58 minutes, meaning she beat her personal target of sub 5 hours for the race. This is also a massive personal achievement for Sarah and a big pay-off for all the hard work she’s done over the past 8-9 months.
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