Rory O'Brien 12/8/1992 - 30/7/2002
Sadly, Rory died from mitochondrial disease just days before his 10th birthday, at a time when mito was even less known than it is today.
Rory was born in north London on the 12th August 1992 a healthy bouncy baby.
Rory did well at school and thrived until the age of eight when he started having seizures in 2001 and ended up in hospital in Dublin, where we were visiting. Rory made a full recovery and it was assumed he had a virus.
in the Luton & Dunstable hospital in Bedfordshire in a semi coma. Unable to diagnose what was the matter with Rory the L&D hospital stabilised him and organised for him to be transferred by ambulance to Addenbrooks hospital in Cambridge for further tests and hopefully diagnosis.
We had many visits to Addenbrooks hospital and subsequent visits to Great Ormond Street. We did blood tests, spinal tap and biopsy.
At that time in 2002, the medics were only aware of two other families with this particular variant of mitochondrial disease. Diagnosis was difficult and support minimal.
Thankfully, awareness, support and research are gradually improving thanks to charities like My Mito Mission and some great medical practitioners in the field. In particular, Professor Jo Poulton – a researcher of Mitochondrial Disorders at the John Radcliffe hospital in Oxford – has done fantastic work over the years and continues to use Rory’s case study to inform scientists and push for a cure. We recently reconnected with the John Radcliffe hospital.
It was such a wonderful occasion for Rory and our family when we welcomed the arrival of the twins, Annie and Gerry on the 8th January 2002. Rory adored having a baby brother and sister and although he passed away 30th July of that year (a few days before his tenth birthday!) we cherish the short time that we all had together.
Mitochondrial disease can be a very lonely diagnosis. If just one person benefits from reading Rory’s story, then that will be wonderful.
Annie, Rory’s sister, who is now 22, will be running the 2024 Oxford Half Marathon to support Rory’s Mission. You can read more about Annie’s run here.
Any funds raised by Rory’s mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out Rory’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Rory’s mission, choose a way that suits you below.
Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.
We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
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