Hope for Barnaby

We’re fundraising to help our beautiful, funny, and resilient 3-year-old son, Barnaby, access specialist medical care through an international multi-disciplinary team - care that may finally offer us answers, insight, and a chance to support our boy’s development in ways not currently available to us in the UK.

This is the hardest thing we’ve ever had to write. After two years of terrifying symptoms, countless appointments, and heartbreaking regressions, we are emotionally, physically, and financially stretched beyond measure, especially with Lucy unable to work due to Barnaby’s needs. And yet, we are still full of hope. We believe that Barnaby’s story isn’t over, and that this next step could change everything.

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From Thriving Toddler to Medical Uncertainty

Barnaby was never an average baby. He walked before he was 10 months old, was cheeky and full of sparkle, and had a way of lighting up every room he entered. He loved drawing, kicking balls around the garden, and playing tricks on us. He was adventurous, determined, and endlessly curious.

But shortly before his second birthday, everything changed.

Over the course of a few days - following several weeks of ear infections, Barnaby suddenly:

• Lost his balance and began falling repeatedly, drifting to the left

• Developed severe insomnia

• Started shaking his head and spinning in circles for hours

• Lost all the speech he had gained, and many other skills

• Seemed not to recognise us, laughing uncontrollably for hours and appearing acutely unwell

• Regressed in nearly every area of development

Those weeks were some of the hardest of our lives. And while the more extreme symptoms eventually eased, Barnaby was not the same. The NHS believed this may have been an inner ear issue, and we hoped it had resolved. But as time has passed, it’s become clear that something deeper is going on.

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A Pattern That Keeps Repeating - And Few Answers

Since that acute episode, Barnaby has been stuck in a cycle of gaining and losing skills. He makes progress for a time, and then it slips away again. The little boy who once ran across the grass now struggles with coordination. He hasn’t spoken again since that initial episode, and his motor skills are too limited to reliably use sign language. Watching him try to communicate with us is heartbreaking and painful.

We’ve also discovered more worrying developments, including mild/moderate sensorineural hearing loss that was recorded on an ABR under general anaesthetic a year ago, but just last week, had disappeared. Fluctuating sensorineural hearing loss in a young child is extremely rare. We’ve also had short episodes of facial drooping (as shown in the photos). All of this, and the above, are deeply concerning, and we are still waiting to see a paediatric neurologist in the NHS.

Worst of all, every couple of months, the original symptoms reappear for several days at a time: balance issues, intense compulsions, extreme sleep disruption, sensory overwhelm, and emotional distress. During these times, Barnaby becomes almost unrecognisable. It feels like parenting two different children, and it is utterly exhausting and frightening.

In our search for answers, we’ve explored countless therapies, from sensory support and diets to music and equine therapy, but we now believe that until we understand what’s happening inside Barnaby’s body and brain, we can’t effectively help him.

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Why We’re Turning Overseas

After months of research and consultations, we are exhausted from trying to coordinate Barnaby's care within a system which ultimately does not support multi-disciplinary thinking. We have been bounced from specialism to specialism, and our boy has endured round after round of testing, with us desperately trying to coordinate things in the middle. We have now been told that "there are cases deemed more clinically urgent", and whilst we understand the pressures the NHS is under, this is not acceptable to us.

We are in the process of arranging for Barnaby to travel to a hospital specialising

in complex early-onset neurological and neuroimmune conditions. They offer a level of testing and clinical investigation that isn’t currently accessible to us in the UK, including metabolic, immunological, and neurological assessments.

We’ve already had a video consultation with the clinic, and for the first time in this journey, we felt cautiously hopeful. Their team is prepared to investigate Barnaby’s case further, and we are desperate to begin.

This would involve:

• Advanced neurological and developmental assessments

• Comprehensive immune, metabolic, and infectious disease testing

• Brain imaging and clinical evaluation

• A tailored treatment or support plan based on findings

The total cost of this trip, including medical assessments, travel, and accommodation, is over £20,000. After two years of paying for private therapies, consultations, and specialist interventions ourselves, we simply cannot afford this next step alone. We are well aware that any treatment will be in addition to this sum.

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Who Is Barnaby?

Despite everything, Barnaby is still the bright, brave, and cheeky little boy we know and love. He adores Shaun the Sheep, water, and cuddles. He’s smart in ways that don’t show up on tests, and every single day, he fights to engage with the world around him, even when his body makes it so difficult.

We are desperate to help him hold on to the skills he has, to stop this painful cycle of regression, and to give him every chance at a happy, connected, independent future.

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✨ How You Can Help

Whether it’s £5 or £500, every donation will go directly toward Barnaby’s medical journey, including testing, treatment, and associated travel and accommodation costs.

If you’re unable to give in this way, the most powerful thing you can do is share this page. The more people who hear Barnaby’s story, the closer we get to unlocking the help he needs.

From the bottom of our hearts, thank you.

For reading. For caring. For believing that no child should be left to slip through the cracks.

We are forever grateful.

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Note on Funds

If we are fortunate enough to raise more than is needed for this phase of Barnaby’s care, all remaining funds will be used to support ongoing treatment, therapy, specialist support, or further medical investigations related to his condition. Ultimately, we need your support to get our son the best support we can, after two years of uncertainty.