Oli (12) and Tom (9) Broadwith from Berkhamsted are pounding the pavements this February in a bid to run 100 kilometres each by Rare Disease Day on 28 February whilst also raising money Great Ormond Street Hospital Children’s Charity (GOSH Charity).
Both brothers are monitored and treated at Great Ormond Street Hospital’s Zayed Centre for Research into Rare Disease in Children, after developing symptoms of a rare heart condition that affects the aorta, a condition that has impacted on at least three generations of their family. The boys had been regularly monitored at GOSH in the lead up to the changes to their heart being diagnosed.
Tom and Oli hit upon the idea of taking on a running challenge throughout the month of February as they both enjoy sports and wanted to keep active while they were home schooling due to the pandemic. They also wanted to give something back to a cause they had a personal connection with. So far the brothers have run every single day in February and are determined to keep chipping away at their target, with the hope of completing their final kilometre on Rare Disease Day (28 February). The energetic duo have already raised £2,500 for GOSH Charity.
Their mum Helen Simpson explains: ‘Both my father and half-brother sadly died of sudden aortic dissections. My four children have also been monitored and Tom and Oli, my eldest two, recently developed dilated aortas.
‘The children are now at the Zayed Centre for Research under a rare inherited diseases clinic as we don’t know what it causing this condition. While I always feel a bit nervous going into hospital for their check-ups, because the boys’ condition is one that deteriorates over time, GOSH is so obviously child focused with a real warmth towards the children and all of that makes a big difference to our family.’
Tom and Oli initially set themselves a £100 fundraising target which they quickly surpassed, much to their surprise. Helen explains: ‘They are absolutely amazed at how kind and generous people have been in donating! On the final day of February, to mark the end of the running challenge, Tom’s doing one of his regular fundraising bake sales for GOSH, he’s made little menus and we’ll be posting some cakes through people’s doors so it’s all socially distanced too.’
The family backs the importance of the focus on research in the lead-up to Rare Disease Day, as Helen explains: ‘I think we all feel incredibly lucky to be under a hospital with the sort of facilities and research centre that GOSH has, the number of researchers who are there to help families like ours is very visible. The boys are really interested in science, so with the entrance to the Zayed Centre effectively being a walkway over a huge research lab, they were fascinated to see what everyone in there was doing and by the idea of medical researchers hard at work in the same building!
‘Research is so important to us because this health condition is something that’s affected three generations of my family and is something that I expect will affect more in the future. It causes huge uncertainty for families like ours, and the only chance of getting answers is in the hands of scientists and researchers.’
To donate to Tom and Oli’s running challenge, please visit: www.justgiving.com/orrr100km