Later this year, I’ll be running the London Marathon.

I was lucky enough to get a ballot place, and I was focused on just completing it without any unflattering footage of my running face being broadcast on BBC1.

Then, earlier this year I discovered that some of my friends have been going through something I couldn’t begin to comprehend and I wanted to support them. I am therefore using the opportunity to contribute in a small way to the fundraising efforts for Emily and Gus’s beautiful two-year-old daughter, Leni.

Leni has been diagnosed with Sanfilippo Syndrome Type B (MPSIIIB) – a rare and severe neurodegenerative genetic condition. 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.

Sanfilippo Syndrome is unimaginably cruel. 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, 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.

You can read more about it at Leni’s main funding page but it is a condition that no child should have to go through.

There is currently no approved cure. However, there is a promising experimental enzyme replacement treatment that may become accessible this year. Emily and Gus are working tirelessly to try to secure access to treatment for Leni, and funding is part of what is standing in their way.

With Leni’s condition weeks and months really matter so the issue is urgent.

There will be large sections of the marathon I am not going to enjoy. But it will make it slightly easier to know I’ve helped towards the most worthwhile cause I could think of. I would be amazingly grateful if you could help me to support them to raise additional funds for Leni, and awareness for other children suffering with the condition.

All funds raised through this page will go directly to Emily and Gus’s main fundraising efforts. Thank you for taking the time to visit this page.