In 2024, my family's world changed forever.

My beautiful son, Bobby, was diagnosed with MPS III (Sanfilippo syndrome) — a rare, devastating and terminal genetic condition often described as “childhood dementia.”

There are no words that truly prepare a family for hearing that their child has a terminal illness. Bobby is still our happy, loving, beautiful boy, but this cruel condition is gradually taking away abilities that most of us take for granted. As his family, our greatest wish is simply to give Bobby the happiest, most comfortable and fulfilling life possible for however long we are blessed to have him with us.

And then, in March 2026, our family suffered another devastating loss.

Completely unexpectedly, my beloved dad passed away.

My dad and Bobby shared an incredibly special bond. Bobby absolutely idolised his grandad. He was his world, his safe place, his hero. Their relationship was something truly beautiful to witness, and losing my dad has left a huge hole in all of our lives — especially Bobby’s who still calls his name most days.

We desperately wish my dad could be here to see Bobby grow, to make more memories with him and to continue being the person Bobby adored so much.

Sadly, he can’t.

But we carry his love with us every single day.

And now, someone who was one of my dad’s closest friends is doing something extraordinary in honour of Bobby — and, in many ways, carrying a little piece of my dad’s love forward with him.

My dad’s best friend Kass has decided to take on a mammoth challenge: walking from Brighton all the way to Blackpool to raise vital funds for Bobby setting off late September and touching down in Blackpool in October.

This isn’t just a walk.

It is a journey dedicated to a little boy facing an unimaginable illness, and a tribute to the love shared between Bobby and his grandad.

It is also a way of turning unimaginable sadness into something positive — something that can help Bobby live the happiest and most comfortable life possible.

The distance will be huge. The physical challenge will be enormous. There will undoubtedly be pain, exhaustion and moments when the journey feels impossible.

But every single step will have a purpose.

Every step will be for Bobby.

The money raised will help with Bobby’s care and the many additional needs that come with living with Sanfilippo syndrome. As his condition progresses, his needs become increasingly complex, and the financial pressures can be overwhelming. The funds will help us provide specialist care, equipment, activities, experiences and support to make Bobby’s life as comfortable, fulfilling and joyful as possible.

We can’t change Bobby’s diagnosis.

We can’t take away the illness.

And we can’t bring my dad back.

But we can surround Bobby with love. We can create precious memories. We can give him experiences, comfort and opportunities to enjoy the life he has.

And we can make sure that his grandad’s love continues to live on through him.

I truly believe my dad would have been incredibly proud of this challenge. He would have been cheering on Kass from the sidelines, probably telling his best mate he was completely mad for attempting it — but secretly bursting with pride.

So as this incredible man sets off from Brighton to Blackpool, we hope you’ll join him on the journey.

Whether you donate £5, £10, £20 or simply share Bobby’s story, every single act of kindness matters.

If you can’t donate, please share this page. You never know who might see Bobby’s story, who might be able to help, or how far your share might travel.

For every mile walked, every blister, every aching muscle and every difficult moment, there will be one little boy at the heart of it all.

Our beautiful Bobby. 💙

And alongside him, in our hearts, will always be his beloved grandad.

This walk is for Bobby.

This walk is for my dad.

This walk is for the memories we have made, the memories still to come, and the love that will never disappear.

Let’s walk for Bobby.

Let’s raise for Bobby.

Let’s make memories for Bobby.

And let’s carry Grandad with us every step of the way. 💙

From the bottom of our hearts, thank you for standing beside Bobby and our family.

Stay tuned for lots of updates as Kass makes his journey up Blackpool.