50 Miles for Leni ❤️

On Saturday 3rd April 2027, I’ll be running the Testway 50 Ultra — a 50-mile ultramarathon — to raise money for two-year-old Leni, who has been diagnosed with Sanfilippo Syndrome Type B (MPSIIIB), an extremely rare and devastating neurodegenerative genetic condition, also known as childhood dementia.

Leni’s story has really touched me. I’m a mum to a little girl who is also called Leni and is a very similar age, so her story has hit particularly close to home. As a mother, it’s impossible not to imagine being in her family’s position.

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 can develop relatively normally with few obvious symptoms in their early years, before progressively losing the skills they have already learned. The condition can cause severe behavioural challenges, hyperactivity, significant sleep problems, seizures and eventually the loss of cognitive and motor function. Tragically, it can also significantly shorten life expectancy.

For Leni, time is incredibly precious.

There is currently no approved cure, but there are promising experimental treatments and gene therapies that Leni may be eligible for this year. The damage caused by Sanfilippo cannot be undone, which means every week and every month matters. Time is simply not on Leni’s side, and there is a real urgency to access potential treatment as soon as possible.

I am completely in awe of Leni’s parents, Emily and Gus, and their determination to advocate for their daughter, raise awareness and do everything within their power to give her the best possible chance. Their strength and determination are incredible.

As a mum, I wanted to do something to help. So on 3rd April, I’ll be running 50 miles for Leni.

I would be honoured and incredibly grateful for any donation you can contribute. Every donation, no matter the amount, will go towards supporting Leni and her family’s fundraising efforts and their fight to access treatment.

You can also read more about Leni, her story and the impact of Sanfilippo Syndrome on her main fundraising page

Main fundraising page for Leni

If you’re unable to donate, please consider sharing this page. The more people who hear Leni’s story, the more awareness we can raise.

50 miles for Leni. ❤️