RichDavis

Participants: Nick Oliver, Nick Gill and Emily Gill
Team: Herbert's Harriers
Participants: Nick Oliver, Nick Gill and Emily Gill
Team: Herbert's Harriers
Copenhagen Marathon · 17 May 2020 ·
Dear Friends, Last Xmas our youngest son Bertie (5mo) was hospitalized with a nasty cocktail of Flu + bronchiolitis (2 doses of each). It laid him low and he spent several months in & out of Chelsea & Westminster hospital intensive care unit relying on O2 and food through nasal tubes. Eventually he came home dangerously underweight (having slipped multiple centiles 50-1st), breathing rapid & shallow breaths and with dysphagia (aversion to eating) resulting from pulmonary aspiration (inhaling food into lungs, infection of lungs). We questioned why he’d been discharged. Finally, Bert was diagnosed by a paediatric respiratory consultant at Royal Brompton as having a 1:1m genetic condition called Surfactant Protein C Deficiency (SFTPC) - an autosomal dominant disorder due to a mutation in chromosome 8. Essentially, without “normal surfactant” the alveoli in the lungs collapse after exhalation, making breathing a challenge. Whilst the disease presents with varying severity/penetration, there is no cure. Sadly, prognosis can be very poor with some babies not living beyond the age of one. We do not know yet where Bert is on the spectrum but do not take it for granted that he is still with us today. With this in mind, and looking for a positive outlet, a few of us have signed up for Copenhagen marathon, May 17 ‘20. I appreciate nobody cares about marathons anymore as achievements become more outlandish. But I’ll be 40 next year and this will be my 7th and last marathon (I promised my wife and other serial charitable benefactors). It will also, frankly, be the first one where the charity really matters to us and where we really matter to them: our chosen charity, childlungfoundation.org promotes and protects the physical and emotional health of sufferers and families affected by paediatric interstitial and diffuse lung disease through the provision of financial assistance, support and education. It’s a tiny charity (owing to the rarity of childrens' interstitial lung diseases) and every £1 counts. Please help us to raise £10k. With this money the foundation can arrange medical conferences, research and at the very least raise the profile of this life-limiting disease whilst providing support to sufferers and their families. Please donate generously to help little Bert and others like him to live their limited lives happily. Gratefully, Nick & Georgina Oliver
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