Reggie. The start of CKD5
We Didn’t Know We Were Raising a Kidney Warrior
If you’d asked me when we first found out we were having a baby what life was going to look like, kidney failure wouldn’t have even crossed my mind.
Like most new parents, we were excited, nervous, and completely unprepared for how complicated things were about to become.
From early on, things didn’t quite feel right. We raised concerns about Reggie’s swelling at appointments, but we were brushed off.
“Probably allergies.”
“First-time parents worry too much.”
We were made to feel like we were overreacting — like we just needed to calm down and trust the process. Looking back now, that’s one of the hardest things to sit with.
Scan After Scan, Something New Appeared
At our 16-week scan, we were told there was increased fluid at the back of Reggie’s neck (NT) — something that can be an indicator of Down syndrome. That moment changes you. Suddenly you’re not talking about baby names anymore, you’re googling medical terms at 2am and trying to stay strong for each other.
As the weeks went on, every scan seemed to bring something else:
A possible cleft lip
A club foot
Light Bowels
Short Thigh Bone
More “we’ll keep an eye on it” conversations
Later, we were told Reggie had hypospadias.
Hypospadias is a congenital condition where the opening of the urethra (where urine exits the body) isn’t at the tip of the penis as expected. Instead, it can be located anywhere along the underside, sometimes closer to the base. It can also come with curvature and affect how the urinary and reproductive systems develop.
It’s not just cosmetic. It often requires surgery and ongoing monitoring, and in some cases it can be linked to wider genetic conditions. At the time, it explained why Reggie was constantly in and out of hospital once he was born — but we still didn’t have the full picture.
A Tough First Christmas
Reggie’s first Christmas — Christmas Day 2024 — should have been magical.
Instead, we were in hospital. Reggie had developed a severe hernia. No normal Christmas Day, no quiet family moments at home. Just fear, exhaustion, and that gut feeling that something still wasn’t right.
That hernia later led to surgery in February 2025.
What still gets me is this: when Reggie went in for that operation, no one knew his kidneys were failing.
Looking back now, it could have gone seriously wrong. His little body was already under more strain than anyone realised.
When Everything Changed
In April 2025, everything came crashing down.
Reggie was rushed to Great Ormond Street Hospital, where he stayed for six weeks. That’s where our lives changed forever. We were told our baby had end-stage kidney failure.
Reggie was started on peritoneal dialysis — a treatment that takes over the job of the kidneys by filtering waste and excess fluid through the abdomen. It’s intense. It’s relentless. And it happens every single day.
At just months old, Reggie became a kidney warrior.
Later, we finally got answers. Reggie has a rare genetic condition called WT1 syndrome, which explained the mix of complications — his kidneys, hypospadias, and everything that had worried us from the start.
How Running Became Our First Fundraiser
Before Two Beans Down ever existed, running was how I coped.
I needed somewhere to put the anger, fear, and helplessness. So I started running — not because I was good at it, but because it gave me something to control when everything else felt out of my hands.
That running journey quickly became something bigger.
It became the start of fundraising for Kidney Care UK and Great Ormond Street Hospital — two organisations that were (and still are) helping keep our son alive. Every mile felt like doing something for Reggie, even on days when there was nothing else I could fix.
In 2026, I’ll be running the London Marathon — my first ever marathon. Not because I’m a seasoned runner, but because Reggie’s already faced harder things than 26.2 miles ever could.
That run is for him.
And it’s for every child and family walking a similar path.
Why We Share Reggie’s Story
We share Reggie’s story because:
Parents should be listened to
Concerns shouldn’t be dismissed
Rare conditions need visibility
Reggie is still on dialysis. He’s still waiting for a kidney transplant. His journey isn’t over — but neither is ours.
And until that day comes, we’ll keep showing up. Running. Brewing. Talking. Fundraising. One step and one coffee at a time.
How You Can Help 💙
If you’ve made it this far — thank you. Here’s how you can support Reggie and families like ours:
☕ Book Two Beans Down
Have us at your event, workplace, or community day and help spread awareness through conversation.
🏃 Support the London Marathon 2026
Donate or share my fundraising journey for Kidney Care UK and Great Ormond Street Hospital.
📲 Follow & Share Our Journey
Find us on TikTok and Instagram and help us reach more people who need to hear these stories.
💙 Donate or Fundraise
Every contribution supports life-saving care, research, and families navigating childhood kidney disease.