My name is Zahra and today I want to share the story of my son Kamran with you.

The beginning of the journey

Kamran was six when we first went to A&E. He had been complaining of stomach pain for a while – the kind you hope is just a bug or something that will pass. But one day it became too much, and we ended up in hospital.

The abdominal pain turned out to have nothing to do with what came later. We never did get a clear answer for what caused it. But while we were there, a routine urine test was done – and that’s when something unexpected showed up.

The test picked up blood and protein in Kamran’s urine. That isn’t normal, but at the time we were reassured and told it was likely a urinary tract infection. He was treated for that and sent home.

Looking back now, that urine test was a turning point. If Kamran hadn’t been unwell with something completely unrelated, we may never have discovered what was going on beneath the surface.

The diagnosis

Over time, Kamran was referred to a paediatrician who carried out a range of tests. One of these was a genetic test – something that, we were told, has only been introduced routinely in the last few years for children who have repeated microscopic blood and protein in their urine.

In that sense, we were lucky.

Alport syndrome is often only diagnosed when someone’s kidneys are already failing. In Kamran’s case, his kidney function and hearing are currently normal. Without the genetic test, we would still be in the dark.

When the paediatrician explained the diagnosis, he was kind and measured, but also honest. He didn’t downplay it. He was clear that this is a significant condition, and that it will bring challenges in the future. Hearing that about your child is something no parent is ever prepared for.

Around this time, we were introduced to Alport UK. Meeting Susie Gear, and connecting with other families through the charity’s support groups and workshops, gave us courage and reassurance at a point when we really needed it. Knowing we weren’t alone – and that there was a community who understood what we were facing – made a huge difference.

The dilemma

As parents, your instinct is to protect your child. One of the first questions we faced was how much to tell Kamran, and when.

In those early months, we focused on what he needed to do day to day: drink plenty of water, take his medication, and watch his salt intake. We didn’t use the name of the condition. It felt like too much, too soon.

But as we began to come to terms with the diagnosis ourselves, we realised something important. We didn’t want there ever to be a big “reveal” moment in his life – a day when he would suddenly be told something huge about himself.

Instead, we wanted this to be something he grows up with, understands gradually, and sees as just one part of who he is.

So over time, we explained more. We kept it age‑appropriate, honest, and calm. The condition isn’t hidden away or whispered about. It’s just part of Kamran’s story.

There will be challenges ahead – we don’t underestimate that for a second. But our hope is that by dealing with it this way, Kamran will grow up resilient, informed, and able to live his life fully, without feeling defined or held back by a diagnosis.

Kamran isn’t scared. He’s aware. He does the right things to look after his kidneys. He’s a normal child, enjoying life, school, friends, and yes – still the occasional “naughty” treat.

In many ways, he’s just doing what we should probably all be doing anyway.

Kamran’s Fundraiser for Alport UK

This story will feel familiar to many families: the uncertainty, the waiting, and the long search for answers. But it is also a story about the power of early diagnosis, honest conversations, and the strength of the Alport community.

For us as a family, this fundraiser is about showing Kamran that he is not facing Alport syndrome alone – that there is a whole community standing behind him. It’s also our way of giving something back to Alport UK, a charity that supported us at a time when we really needed it.

Small charities like Alport UK don’t always get the visibility or funding that larger organisations receive. But their impact is enormous. From trusted information and emotional support, to raising awareness and funding research, the work they do changes lives.

By fundraising for Alport UK, we hope to help ensure that other families can find the answers, understanding and support they need, just as our family did.

Every donation, no matter the size, really does help.

Please donate what you can using our JustGiving page.

Thank you so much for your support and generosity,

Zahra Siddiqui