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<div><strong>125 miles. 77 portages. 1 enormous, unexpected challenge.</strong>
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<div>From 3rd–6th April 2026, Tom will take on the legendary Devizes to Westminster Canoe Race — a feat already known as the<strong> “Mount Everest of canoe races.”</strong> It’s a 125 mile, non stop ultra marathon from Devizes to Westminster, forcing paddlers through 77 locks, brutal night sections, and some of the toughest endurance conditions imaginable. It is widely regarded as one of the most demanding canoe races in the world.
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<div><strong>And this year, the challenge got even harder.</strong>
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<div>After months of training, Tom’s third partner, Dave, had to withdraw just one week before the race. Dave is now stepping in as Head Coach and support crew, but the boat suddenly had an empty seat… and a huge problem.
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<div><strong>Enter Kenny.</strong>
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<div>Kenny had never trained with Tom until last week. With only days to prepare for one of the most brutal endurance events on the planet, he has stepped up with unbelievable courage. It’s nerve racking for both of them: –
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<div>For Tom, starting again with a brand new partner after flying through training with Dave.
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<div>For Kenny, facing an extreme test with almost no time to prepare.
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<div><strong>But they’re doing it anyway — because they’re doing it for Leni.</strong>
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<div><strong><em>Why Leni Needs Us</em></strong>
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<div>Leni is just two years old — a loving, full of life bundle of energy — but she has been diagnosed with <strong>Sanfilippo Syndrome Type B (MPSIIIB)</strong>, a devastating, ultra rare, rapidly neurodegenerative genetic condition known as <strong>Childhood Dementia.</strong>
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<div>Children with this condition have a defect in a single gene that prevents them from breaking down a sugar molecule called heparan sulfate, causing toxic waste to build up in the brain and body.
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<div>Children develop relatively ‘normally’ with no obvious symptoms until they are around two years old, then over a short amount of time they lose all skills once learned, experience severe behavioural challenges, extreme hyperactivity, insomnia that can last for days, seizures, a total loss of cognitive and motor function, and a premature death in their early to mid teens, as well as many other horrific symptoms. Sanfilippo is relentless and leaves nothing untouched.
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<div><strong>Leni will lose the ability to walk, talk, play, laugh, eat, and eventually her life to this condition.</strong>
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<div>There is no cure and no approved treatment — but there is promising experimental therapies that Leni may be eligible for this year. These treatments have shown extraordinary early results, but they are not yet accessible through the NHS. Her family must raise significant funds to give her the chance to receive them.
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<div><strong>For Leni, every single day matters.</strong> The damage caused by the condition cannot be undone — so the difference between accessing treatment now versus a year from now could be the difference between a near normal life… or losing everything.
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<div>This truly is Leni’s only hope.
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<div><strong>Why This Challenge Matters</strong>
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<div>Tom and Kenny aren’t just paddling a race. They’re paddling for a little girl’s future.
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<div>Every mile they grind through, every lock they haul the boat around, every hour they fight exhaustion is for Leni — to help give her the chance she deserves.
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<div><strong>If you can, please donate and share. Every contribution makes a real difference.</strong>
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Tess Cosad

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125 Miles of Grit, 125 Miles for Leni

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