200km. 72 hours. Marching the toughest terrain in the UK.

Time is against us and we need to help save Leni.

My beautiful goddaughter Leni was diagnosed with Sanfilippo Syndrome, also known as Childhood Dementia, just days before her second birthday in October 2025. Like most people, I had never heard of it before, but it is devastatingly cruel. Sanfilippo Syndrome is caused by a tiny genetic error that prevents the body from breaking down complex sugars, which then build up in the cells and brain and become toxic over time.

Without treatment, Leni will gradually lose the ability to walk, talk, play, and laugh. Her parents, my best friends Gus and Emily, will have to watch their daughter slowly fade away. The life expectancy for affected children is their early teens. There is no cure and currently no approved treatment - Leni and her parents are faced with an uphill battle to get her the help she so desperately needs.

There is hope, but it is a race against time.

A US developed enzyme replacement therapy is one clinical trial away from approval and may be available early through an Expanded Access programme. If successful, it could stop further damage to Leni’s brain.

In January, Gus & Emily launched an urgent campaign to raise awareness and funds to give her the best possible chance of accessing this experimental treatment.

Four of us who love Leni dearly are taking on a gruelling uphill challenge to help raise the funds and awareness to make Leni’s uphill battle a little easier.

From 4-6 March, we will be running/hiking/marching/crawling a 200km ultra through the Brecon Beacons in Wales. The route will comprise multiple iconic marches known in military circles as some of the toughest in the UK. This deliberately removes recovery periods, placing emphasis on endurance, resilience, navigation and sustained teamwork.

Every minute matters for Leni. Toxic waste builds up in her tiny body every single day and the damage cannot be reversed once it is done. Time is working against us. Ideally, we would train and condition for such a demanding physical and mental challenge, but we do not have time. Leni does not have time.

Donate if you can. Share if you cannot. Help us save Leni.

#Hills4Leni

All donations will be added to Leni’s primary gofundme campaign: here

Leni’s instagram: @saving_leni

More information about Sanfilippo Syndrome